From Pathlight, Fall 2011 - Pulmonary Hypertension Association
Transcription
From Pathlight, Fall 2011 - Pulmonary Hypertension Association
A newsletter of the Pulmonary Hypertension Association 0 Fall 2011 0 Volume 20 No. 4 Pathlight Kimberlee Ford speaks at PHA's Congressional Luncheon during Awareness Month 2010. Persistent Voices INSIDE! Highl ights PHenomenal Lives 3 A Breath of Fresh Air 6 Health Matters 11 Ask a PH Specialist 11 “Helpful Hints” 16 Advancing the Cause 17 Advocacy in Action 25 Support Groups 28 Special Events 32 Persistent Voices37 Community Classroom 42 PHA on the Road Recap 45 PHenomenal Youth 48 Family PHocus 50 #12097 Federal employees and the military can support the PH cause! PH Awareness Month November 2011: The Power of One T he story of the PH community is one of ending the isolation: When Amy Fair of Missouri was diagnosed with PH, she didn’t know anyone else with the disease. Through PHA’s online community, she met Florine Tripp and a year later they met in person for the first time. After hours of conversation about PH treatments and the challenges of living with the disease, they began to plan a support group. “Even if nobody else shows up,” Amy says. “I’ve met Florine, and Florine and I are together.” A story of advancing science and improving medical care: Early this year, researchers including Dr. Sebastien Bonnet of Laval University in Quebec, Canada, published original research highlighting the role of the PIM-1 protein in PH. PIM-1 is virtually unseen in nonPHers, but in those with PH it appears in amounts relative to the severity of the disease. Dr. Bonnet’s discovery provides new insight into PH and has powerful implications for improving diagnosis and treatment. A story of everyday heroes: Christina Rodrigues learned about PHA for the first time when her then 4-monthold daughter, Olivia, was diagnosed. This year, Olivia turned 3 and Christina set out to raise awareness of PH and funds for PH research through the inaugural Power for PH Phun Walk in Olivia's honor. Inspired by Christina and Olivia, friends and community members pitched in to make the event a success. Power for PH received significant media coverage and raised more than $16,000! Story continued on page 26 PHA's 10th International PH Conference and Scientific Sessions is coming! Turn to p. 42 for a sneak peek of what's in store! M e s s a g e f r o m ph a ’ s b o a r d c h a i r Laura Hoyt D'Anna The most valuable "currency" of any organization is the initiative and creativity of its members. ~ W. Edwards Deming in Stephen R. Covey's Principle-Centered Leadership PHA is an organization built upon vision — the vision that no one should have to face a lifethreatening illness alone; the vision that one person can make a difference; the vision that together we can move (and climb!) mountains; and the vision that there will be a cure. For over two decades, this vision has been mobilized by awe-inspiring leadership — leadership that created a vital organization from a modest kitchen table; leadership that prioritizes serving others; leadership that connects PH patients in China, Colombia and South Africa (only three of PHA’s 50 international partners) to patients living in the U.S.; leadership resulting in nine FDAapproved treatments for a rare, “orphan” disease with relatively few patients nationwide; leadership that says, “Yes we can!” even in the moments when it may feel like we can’t. In November, we again have the opportunity to fulfill our vision through initiative and creativity during PH Awareness Month. Events will take place across the country ranging from fundraisers, media opportunities, and meetings with Congressional Members, to personal community and PHriendgathering connections. Some of these events will be orchestrated by talented PHA staff under the keen leadership of our president, Rino Aldrighetti. However, the vast majority of these key interactions will happen because patients, family members and caregivers have the resolve and creativity to make them happen. Here are some of the reasons why we think telling your story during PH Awareness Month is particularly important: 3. Although many of our Congressional Members and other policymakers have empathy for what we have experienced as individuals, they are especially interested in our joint interests; 4. In general, people truly want to help and helping those around you understand the challenges and triumphs you face living with PH can increase the support you receive within your community settings; and 5. Many individuals report that being involved in this way is an incredibly empowering experience. You are PHA’s currency. You are the leaders who will pave the way to our future! I know that what you accomplish during our upcoming Awareness Month will be nothing short of amazing! w In partnership (with anticipation and admiration!), 1. It is your story and no one has the power to tell it like you do; 2. Our collective stories create a swell of needed attention across the country and establishes urgency for our cause; pathlight: a user’s guide PHenomenal Lives Health Matters Advancing the Cause Look for this icon to direct you m e d i c a l p r o f e s s i o n a l s to important information for healthcare providers. 2 Community Classroom PHenomenal Youth international news www.PHAssociation.org PATHLIGHT FALL 2011 Family PHocus Look for this icon throughout Pathlight to read news from around the world. PHenomenal Lives Patient Mentor Spotlight: Sean Wyman PH Email Mentors are patients and caregivers standing by to help other patients, caregivers and parents through one-onone, email-based support. Sean Wyman is both a mentor and a co-leader of Generation Hope, PHA’s virtual support group for young adults. What’s your PH story? I was diagnosed on Oct. 18, 2002 (my th 19 birthday). My mom and I were on vacation in Colorado Springs, Colo., and I became really symptomatic. It was as if an elephant was tapdancing on my chest in stilettos. I blacked out twice in 24 hours. My mom brought me to the emergency room. From there it’s all a blur. I was in the ICU, then a regular room, and then transferred to Denver to see PH specialists. Since I was such a “well-behaved” patient, they gave me access to a laptop. I found PHA and read the entire site in a night. I wouldn’t say I’ve made changes to my life; I’m just more aware of how I’m feeling. One of my school friends told me she was envious of me. When I asked her why, she said, “Because of your disease, you get to stop and admire the scenery.” I never thought of it that way when I was getting winded walking up hills, but now I do take time to “stop and smell the roses.” When one of my doctors told me I would never be able to work or go to school, I decided to test that theory. PH hasn’t really changed my college life — I have changed college life because of my PH. I have increased awareness of PH on campus by giving presentations to classes and student organizations. My goal initially was to become a teacher (my family is full of teachers), but one of my college professors said I had a higher calling. I looked into respiratory therapy, but after taking a few of the classes, I realized I was capable of becoming a physician. I would like to think that I will stay in the world of pulmonary/cardiology medicine, but time will truly tell. After medical school, who knows what I will do. I have some ideas, but I’d like to keep a little mystery about me! What advice would you give to other young people with PH? The best advice I can give is, go to school and utilize all of the services! Seriously! I was scared to go back to school after my doctors told me I wouldn’t be able to. Ha, serves them right for telling me “No!” School helped me find some normality while doing something I love: learning. The most important thing is to be positive and informed. I found out about special student services and college became a breeze. Someone was always there to advocate for me, or to establish accommodations like rides around campus, special class seating (I like the front row), increased test-taking time, etc. What does being a PH Email Mentor and a coleader of Generation Hope mean to you? It has given me a way to connect with other patients. There are occasions when I need to talk to someone and share an experience, and being a leader in the PH community gives me that chance. The large network being developed is amazing. Every young adult should join Generation Hope. Young adults experience a different set of trials and tribulations than older adults. Questions about relationships, marriage, education, careers and so forth are commonplace in Generation Hope. We share our experiences with each other and come up with better ways to raise awareness of PH in our communities so future friends and families understand what we go through. Being a leader and mentor has been amazing. It’s opened my eyes to other experiences, helped me better understand how to work with others and, most importantly, helped me better understand myself! Why should someone contact a PH Email Mentor? You should email a PH Email Mentor because we’ve "been there, done that." Early on, I had people who acted as my mentors. Soon, I became a mentor for children and young adults. I felt that I could connect with them and tell them how to cope with PH and get a sense of normalcy back. The most important thing is to make a connection with someone who’s experienced life with PH. Some look at it as a horrible disease — I look at it as a way to be philanthropic, a lifelong learner and, of course, a lifelong PHriend. w Interview conducted by Emma Powers, Former PHA Patient Outreach & Services Intern Email Sean at [email protected] or connect with another PH Email Mentor by gender, age, associated disease or topic of interest at www.PHAssociation.org/Mentors. PATHLIGHT fall 2011 Patient-to-Patient Support Line: 1-800-748-7274 3 PHENOMENAL LIVES Art for My Hear t I a treatment plan using supplements and t had been a long, cold winter in herbs. My right ventricular systolic pressure Colorado and even in April there (RVSP) improved, and I wasn’t getting were few signs of spring. I was worse, but my functional capacity was still diagnosed with class IV idiopathic very limited and my oxygen saturation would PAH in 2008, and the isolation and drop into the low 80s on exertion. lack of social interaction in winter gets At first, I thought perhaps I was to be a challenge for me mentally. So imagining things, but in late spring it on one of my grocery shopping trips, I seemed like my heart function was stopped by a craft store and wandered improving. I could go up the stairs to my through the aisles to see what I could apartment instead of using the elevator find. I had never been an “artist” and Janet painted "Happy the Beagle" all the time and I didn’t see stars when many of the crafts I had done in the in May 2011 I got to the top. I ventured out on a few past (knitting, needlework, etc.) were hikes with my husband; the first was fairly easy but becoming difficult for me because of arthritis. quite an accomplishment. The second was much more As I was walking through the paints, a little ambitious. We were at a high altitude, and we hiked to watercolor pencil kit caught my eye. It had eight pencils, a fishing lake on a rough trail. My husband carried my a good quality brush and an instruction book. On a whim I oxygen concentrator, and I was “tethered” by the tubing, picked it up, and that evening I started going through the walking behind him. When we got to the lake, I took out a first lesson. It was fun, took very little energy and didn’t tiny watercolor field kit and painted the beautiful scenery make a mess. Just the right combination for me! while he fished. It felt so wonderful to be doing something After going through the lessons, I bought some normal again! watercolor paper and did a few little paintings for my A few weeks ago I had my first echo since I started grandchildren. I was enjoying it so much I decided to painting. To our surprise my RVSP had dropped into do more studying about watercolor technique, so I the 50s. My doctor and the cardiologist thought it must checked out some books and videos from the library and have been an error in the measurements, but I know watched lessons on YouTube. I bought some inexpensive watercolor paints and did my first real paintings at the end better. I can feel the difference. Is it a coincidence? I don’t think so. The American Art Therapy Association of April and first weeks of May (still snowing and cold). has documented the benefits of art as a healing tool for Over the next weeks, I realized this was more than all types of mental and physical conditions, including a passing interest to get me through until summer. I pulmonary diseases. purchased better quality paints, paper and brushes and I would encourage all of you who think you are even joined a watercolor society. I now look forward to artistically challenged to give it try. It’s not about getting up in the morning and painting, even if it’s just a producing a masterpiece or winning a show. Art is simple pen and ink with watercolor wash. My “studio” is expressing your feelings, communicating with shapes and a 5’x6’ space in my small condo (just a table next to a color and light, and sharing your own unique perspective window with good natural light most of the day). of the world around you. Here are a few tips that might It has definitely made a difference in my outlook help you get started: and mental and physical energy. When you have severe PAH, it’s easy to want to give up. Once I started painting, I 1. Choose ONLY non-toxic materials. I picked began to realize that this was becoming a significant part watercolor as my medium because you don’t need of my legacy. I took photos of my sketches and paintings any solvents to dilute the paint or clean brushes. and saved them in a file so that they would outlast me. However, even with watercolor, some of the pigments Because of a genetic disease that keeps me used are considered toxic (cadmium and cobalt most from metabolizing drugs properly, I don’t tolerate any notably). There are kits and tubes you can buy that of the medications normally prescribed for PAH. Of are certified non-toxic. Look for the ACMI label. We course that pretty much seals your fate when you’re in need to do everything we can to protect our lungs, advanced stages. Applying my background in nutrition and and unfortunately art supplies often contain VOCs biochemistry, I did a lot of research and came up with Story continued on next page 4 www.PHAssociation.org PATHLIGHT fall 2011 Story continued from previous page PHENOMENAL LIVES (volatile organic compounds) and hydrocarbons that can compromise both lung and liver function. Even naturally occurring compounds like ammonia, turpentine and alcohol can be very hard on our lungs and worsen PAH. 2. Take advantage of online learning opportunities and library resources. As mentioned earlier, I watched many instructional videos on YouTube, and just recently got a subscription to ArtistNetwork.TV, which offers videos of workshops with well-known artists in all mediums. 3. Look for community resources. If you are able to get out and attend classes, community colleges and adult education programs are a great way to develop your skills. Most senior centers offer free or low-cost art classes. I just started attending a live model class once a week at my neighborhood center to get experience drawing portraits. We have a great time and everyone just chips in $3 to pay the model. 4. Communicate with other artists. The greatest resource for me has been a website called www.WetCanvas.com. There are forums for every medium and subject area. I have learned so much from this wonderful online community and made some great cyber-friends from all over the world. You can post your artwork (they welcome beginners and give helpful tips for improving), participate in monthly challenges to help you set a goal, and just chat with people of all abilities and disabilities! 5. Share your work with others. Art is about communicating. If friends and family laugh at your first attempts, just ignore it and keep going. Find a group of people online or in your community who understand the value of art therapy and who will encourage you, even if it seems primitive and very beginner-ish! Make sure you save at least some of your artwork and photograph or scan and file it digitally if possible. As I write this, I’m looking forward to a few hours of painting today and a visit to a local watercolor exhibition with a friend who is also disabled and interested in art therapy. I hope you’ll give it a try — your heart may thank you in more ways than one! w By Janet Stone, PH Patient To read Janet's article in its entirety, visit www.PHAssociation.org/OurJourneys/JanetStone. To view a workshop on creative expression from PHA's 9th International PH Conference in 2010, visit www.PHAssociation.org/WordsForWellbeing. Show Your Healthcare Who’s Boss Introducing PHA’s Empowered Patient Online Toolkit S tudies show that patients who take the time to get and stay organized have an easier time following their medication regimens, alleviating symptoms and actually helping them feel better. This is no news to long-term PH patients and caregivers, many of whom have developed elaborate strategies for tracking medication dosages, nurses’ pager numbers, insurance plan information, appointment calendars and much more. Drawing on the collective wisdom of the PH community, PHA has assembled some of the most useful tools, templates and checklists used by PH patients and medical professionals in our brand-new Empowered Patient Online Toolkit. The toolkit includes a range of resources that patients and caregivers can download in PDF format, personalize, and then either save to an electronic flash drive or print out to create a personalized medical binder. The Empowered Patient Online Toolkit can help you: • Summarize your medical and family history for new doctors • Be prepared in case of an emergency room visit • Track your medications and medical team contacts • Prepare for doctor’s visits • Record symptoms and concerns between medical appointments • Summarize important information from appointments and hospital visits • Keep your insurance information organized • And more! Get started at www.PHAssociation.org/OnlineToolkit PATHLIGHT fall 2011 Patient-to-Patient Support Line: 1-800-748-7274 5 PHENOMENAL LIVES a breath of fresh air Design Your Own Support Group! A Guide for Young Adults... and the Young at Heart W mothers, teachers and counselors who offer support to ebster’s Dictionary defines a support group as “a members of the community in need of advice, a visitor, a group of people with common experiences and social gathering, a phone call or education. concerns who provide emotional and moral support There are so many different ways that we, as for one another or sustain each other by discussing patients and caregivers, can offer support to one problems affecting them.” another. All ages need support — and not necessarily One of the first things that my doctor advised the same kind. Consider school-age me to do when I was diagnosed in children who just want to fit in. They 2007 was to get in touch with local There are so many struggle with not being able to do what support groups, and so I did, almost different ways that their friends can like exercising in PE immediately. I started attending my class or playing on the playground. What local group’s meetings in southern we, as patients and about teenagers? They have to deal with Colorado as often as I could and caregivers, can offer peer pressure, wanting to be accepted then, in the summer of 2010, the support to one another. and making positive choices for their opportunity arose for someone to take All ages need support health. There are also young adults who over as leader. Recognizing the physical — and not necessarily have questions about relationships, the handicaps that this disease had placed the same kind. future, sex, the possibility of children and on so many, I figured that I would put being considered “disabled.” At times, my youth, energy and abilities to good patients and families just need an outlet use. It became my personal mission to where they can be themselves without limitation. do all that I could to support PH research and become an That is what the PHun Lungs group is all about. active member of the PH community. The support that I had experienced from my local support group made such The group recognizes the differences in various a difference in my life and inspired me to try to give some populations’ struggles and respects them by meeting their individual needs. For example, if someone in the of that support back to others. group needs an advocate to help deal with a difficult I have 12 years of experience working with situation, that is what we become. If someone needs people of various age groups, ethnic backgrounds and developmental levels, and my work, volunteer experience assistance organizing a fundraiser, we take on that role. We consider ourselves a stable and accepting support and education have taught me that people are all unique system, a “PHamily” without question or hesitation. individuals requiring very diverse forms of attention and We like to base our gatherings around fun activities support. With this in mind, last year I set out with some as often as it is appropriate. While we launched with like-minded support group members to start a different young adults in mind, at this point the group is for all kind of group. This group was designed to complement ages, not only the young but also the “young at heart.” what we already had going and as an alternative to local Although it can be a challenge to coordinate, meeting patients whose needs weren’t met by the traditional in person is always the goal. And remember, support support group. We launched an “Under 35” support groups of all structures and sizes are important. Support group with the idea of meeting once a month, face-tocan be a large community with a similar interest or issue face, with younger individuals willing to talk about their or it can be you, just sitting at a kitchen table with three struggles and challenges as a young adult — dating, friends. school, and working with a chronic illness. As a Generation Hope member and support group “The Front Range PHun Lungs,” as we called the leader, I’d like to offer some ideas that have been group, has now become an interactive support group shared with me to those who are considering starting that meets at various locations and serves as a social groups geared toward young people dealing with PH: club for patients, caregivers, friends and family — but also addresses specific issues of different populations Story continued on page 31 when needed. It is led by a core group of patients, young “ ” 6 www.PHAssociation.org PATHLIGHT fall 2011 International Faces of PH: Huan Huang (Gloria) M y name is Huan Huang (Gloria in English); I am a 29-year-old woman from China, and you might say I’ve lived a double life. During the day, I make excuses to avoid walking or hanging out with colleagues, declining their invitations for dinners and parties. In the evening, I am cared for by my mother. I was diagnosed with pulmonary hypertension in 2005, but I’ve lived with breathlessness and fainting for years. As a teenage girl, I was misdiagnosed with asthma and was told to hide my illness so I could attend college. In China, high school students who have been diagnosed with asthma are deprived of the right to take a college entrance exam. As a result, I began my therapies for asthma in secret, but climbing stairs remained challenging. Luckily, I completed my degree in English and worked as a project manager in a state-owned enterprise for a few years. When I’m out with my parents, we often hear, “Have a seat, ask your daughter to run errands for you.” On buses or subways, people give seats to my parents instead of me because they are in their 60s and 70s. In China, PH patients are not recognized as disabled, for the standards are highly restricted to physical appearance. One week after my diagnosis, I was mocked by my employers for telling them that I had a fatal disease, because they didn’t think moving slowly was a lifethreatening condition. One year later I fell into a deadly coma in my office and was taken to the hospital. Upon my mother’s urgent phone calls, Dr. Zhi-Cheng Jing, a PH specialist in China, rushed to the hospital and recommended iloprost (VentavisTM), which brought me back to life. Dr. Jing also gave me a copy of PHA’s Pulmonary Hypertension: A Patient’s Survival Guide and told me there are many other medicines on the international market. However, in China patients must wait until therapies are approved by the government. One year later, when my medications became available, I had to pay all of the costs, since orphan drugs are not covered by medical insurance and there is no definition for rare diseases in China. To make matters worse, shortly after I regained consciousness, I got fired by my company. One year before my diagnosis, I was awarded the title "Most Valuable Employee,” but one month after my coma, I was rendered useless. My company finally believed that PH is deadly. After spending all of my savings on PH medicines, I was hired by another company that was unaware of my illness. If my PH came out in the open, I knew I would lose my job. Once, my colleague even invited me to buy lipstick with her because she thought my blue lips were a new fashion trend! During my regular hospital check-ups, I was surprised to find that my experiences were better than many other patients in rural China, who are unable to afford medical care and are incapable of working. Some of them have even experienced discrimination for not having children. The more connections I made with other patients, the more problems I found. I began to organize advocacy activities, submit letters and proposals to government officials, and I formed relationships with other rare disease groups. Since 2009, I had hoped to start a non-governmental organization (NGO), but this decision proved difficult. If I had publicized my condition and ventured into establishing an NGO, I would have had to invest funds, quit my job and live on my savings account. After facing great difficulty in NGO registration, strict government administration, and the skyrocketing cost of my medicine, I waited to move forward until 2010. That year I met director Ziye Lee, an independent documentary filmmaker. With her help in July 2011 we finally co-founded our NGO, the ISEEK PH Social Service Center, and we are currently working on a documentary on PH patients all over China. Fighting PH and founding our NGO was tough, but there were always people who supported us with love and care and there are always new solutions ahead. During our preparation period, patients, families, doctors and volunteers from all walks of life offered their help, and this has strengthened my confidence and persistence. In the future, I do believe more Chinese patients will benefit from what we are working toward today. w PHENOMENAL LIVES “I am a slow walker, but I never walk backwards.” ~ Abraham Lincoln international news By Huan Huang (Gloria), PH Patient Visit www.PHAssociation.org/PHInternational/Faces for more patient stories from around the world. To see a video about Gloria's NGO, visit www.PHAssociation.org/SlowWalker. PATHLIGHT fall 2011 Patient-to-Patient Support Line: 1-800-748-7274 7 PHENOMENAL LIVES PH Plus: Life with associated PH 8 Living with PH Plus... HIV W hen I look back at who I was when I was first diagnosed with HIV, it's hard to believe I am the same person. I knew I was at risk. My boyfriend was HIV-positive and we took minimal precautions based on uneducated decisions. The only thing I can say in my own defense was that in 1995 there was little HIV education available, and syringe exchange programs, even in New York, were only open a few hours a day, a couple days a week. We could never make it there in time to collect clean syringes, but we thought we had figured out how to use them without putting me at risk. We were dead wrong. I was stupid and careless. I have never been sick from HIV. I am what they call a long-term non-progressor. My viral load is almost nonexistent and it took 15 years for my T-cells to decline to a point of concern. I have never been on HIV medication. For the past 15 years, I have lived and breathed HIV. I’m an AIDS treatment activist, focusing on such issues as novel drugs in development for HIV, including gene therapies, immune-based therapies and therapeutic vaccine. My big focus now is cure research. With one person already cured of HIV (though his treatment cannot be replicated for most), we are closer than ever to finally ending the AIDS crisis. Even so, my biggest problem is not HIV. It is my pulmonary hypertension that is the more likely of the two to take me down. I was diagnosed seven years ago with PH. I remember the night that I realized something was wrong. My dog, Jo-Jo, a rescued Akita, loved to take off running whenever he got the chance. He'd make me chase him around, pretending to stop and sniff a tree so I could catch up, allowing me to get within arms' reach before running again until he’d had enough. I knew the game well, and having no choice but to let him do this ritual, I began chasing him through the streets of the Bronx. But this night was different. After a few minutes my lungs started to burn. The air seemed to be disappearing. I kept needing to stop. Jo-Jo, of course, stopped beside me each time. My heart began beating wildly and I felt like I was hyperventilating. I couldn't catch my breath. Even with Jo-Jo mercifully waiting for me, I could barely keep up with him. I couldn't go home, even to get help, because I was afraid he'd run into traffic. I began crying uncontrollably. I remember walking past some kids who had been hanging out on the corner. One said, “Damn, girl, you ain't caught that dog yet? What's wrong with you?” I wanted to scream, “Something is wrong with me – I need help!” By the time I caught Jo-Jo, I thought I was going to die. When I finally walked through the door of my apartment, I fell to the ground, hysterical, and threw up. Luckily, my doctor had recently seen another doctor diagnose PH, so he sent me for an echocardiogram upon seeing my symptoms. Three weeks later I was at the 16th International AIDS Conference in Bangkok, Thailand, when it was time to call in for my results. After I was given a diagnosis of pulmonary hypertension over the phone, I immediately called a cardiologist friend for an explanation. He didn't need to say much. I knew from his voice it was bad. I have found that stress will aggravate my sickness and symptoms. Unfortunately, stress is a major factor in my life. Today, I am trying to minimize the amount of stress I feel and improve the way I handle it. I am newly married to a wonderful man from the United Kingdom, and as soon as the U.S. government approves his visa, I can start living the life I have always wanted — a quiet life with much less stress. I will not give up. I am surviving HIV, and I plan to survive PH for as long as superhumanly possible. I have much to live for, particularly in the form of a gorgeous Brit. I am finally learning to come to peace with myself and the world. My PH may be HIV-related, or it may not. But one thing is for sure: more HIV physicians and patients need to be made aware of the risk of PH in HIV patients. One in 200 HIV-positive people have pulmonary hypertension, but because it is normally so rare, diagnosis comes too late for too many. I was lucky and I will work until my last breath to make sure that others are lucky as well, being diagnosed early and getting the appropriate treatment. My life is not nearly over, it has only just begun! w By Jeannie Wraight PH and HIV Patient www.PHAssociation.org PATHLIGHT fall 2011 A Prepared Army Wins the Insurance Battle for many PH patients, but we also had to prove it would be unsafe to lower my dose. The Road to Victory: I worked with Caremark and Accredo to obtain copies of each prescription my doctor had written for RemodulinTM since I started on the drug in 2006. They also provided copies of every RemodulinTM-related bill they had on file and proof that all my previous insurance companies had paid for the drug at the higher dosage. I also had copies of Explanation of Benefits (EOBs) from my previous insurance companies, additional evidence that insurance had covered my medication at the prescribed dosage. My PH specialist provided my complete medical records and made all the contacts necessary to connect the different groups of people helping me. She also gave us copies of academic papers regarding RemodulinTM dosing. United Therapeutics provided additional research articles and information. Finally, PHA provided a letter signed by its president and the leaders of its Scientific Leadership Council. My lawyer compiled all the information and submitted it to the insurance company. Within a few days, the insurance company notified my lawyer and PH specialist that insurance would pay for the prescribed dose of RemodulinTM. Some Lessons Learned and Take-Home Tips: The first step is always to contact your PH specialist. Often a phone call from them is all that is needed. They may also have contacts with the pharmaceutical companies and access to legal assistance. Insurance companies are big and tough, but when you get pharmaceutical companies and hospital legal departments arguing your case, they realize they can’t simply scare you away from a fight. Know your state’s health insurance laws (and the terms of your health insurance contract). I am fortunate that my state has a mediation process, independent of the insurance company, which can be used when insurance companies deny claims. This would have been our next step, which gave the insurance company an incentive to treat me fairly in their internal reviews. It is essential to know how much leverage you have. Ask for help. Besides my PH specialist and her resources, we involved my union’s insurance committee, my employer’s health insurance broker and a local attorney. They gave me direct support and helped ease the stress. Don’t panic, and don’t give up! w PHENOMENAL LIVES I was diagnosed with PAH during the spring of 2005. I am fortunate to be virtually symptom-free, and I continue to work full time. Since 2005, my employer-based insurance has changed providers four times, and I was declined coverage of subcutaneous RemodulinTM after each change. The first three times took only a phone call from my PH specialist to the new insurer in order to get the drug approved. The most recent change, however, was a different story. The Persistent Denial: When I learned that I would be switching insurance once again, I filled out the required paperwork for continuation of care and pre-approval of my medication. As usual, I received a standard letter denying coverage. As with previous insurance changes, I emailed my PH specialist who was already aware of the situation. My PH specialist spoke to the insurance company’s medical director, who assured my PH specialist that my medicine would be approved. A few days later I received a letter granting me a 30-day approval pending further evaluation, but this was followed shortly thereafter with a rejection letter from the insurance company’s pharmacist. After numerous additional phone calls between my PH specialist and the insurance company, I was informed that the insurance company was still refusing to pay for my medication. At this point I was told that I might need to get a lawyer. The Standoff: My insurance company picked the wrong patient and doctor to mess with. We formed what I referred to as “my army” to fight the battle. I contacted a lawyer, Caremark, Accredo, and my employer’s insurance broker to work on my behalf as a go-between with the insurance company. My PH specialist was able to pull together a team from United Therapeutics, the legal department at University of Chicago Hospitals and the leading physicians who work with PHA. It turned out that the insurance company was basing its decision solely upon the dosing information in the package insert for RemodulinTM. Since the dose that I use is higher than the dosing information listed on the package insert, they claimed that it was not medically sound; they would only approve the dose listed in the package insert, half of what I normally receive. Not only did we have to prove that the dose I received was typical By Kathy Morton, PH Patient PATHLIGHT fall 2011 Patient-to-Patient Support Line: 1-800-748-7274 9 CON V ERSATIONS IN CAREGI V ING PHENOMENAL LIVES C aregiver S hout -O ut ! Graeme Warner honors his wife, Jean M y name is Graeme Warner. I am 62, have had PH for 19 years and live in Edinburgh, Scotland. I live with my wife of 15 years, Jean (65). I depend VERY greatly on her. I am becoming less mobile, more limited and cannot do as much now as I once did. All the same chores have to be done — the supermarket, the garden, our coal fire, all the usual domestic chores. The supplies for FlolanTM must be organized and put away in an upstairs cupboard to be retrieved throughout the month as required. The list is endless. Anyone with PH or caring for someone with PH will know what I am talking about! It is so easy to begin to take your caregiver for granted. I try very hard not to do so. However, I realized very recently just how very much I have come to rely on — indeed depend on — Jean for my day-to-day life. She went to Australia for about six weeks to visit her younger son and his two daughters, one of whom she had only previously seen on Skype. I did not travel with her. We made an honest assessment and decided it would just be too difficult. I was, therefore, on my own for six weeks. If anything was to be done, only I was available to do it. Boy, was that ever hard work! Let's acknowledge with gratitude and praise what our caregivers do for us, how much we depend on them and how different our lives would be if they were not around. Let's hear it for caregivers! w Graeme with his wife and caregiver, Jean, on holiday in Spain. For a chance to express gratitude to your loved one in Pathlight, email submissions to Michal at [email protected]. Announcing New Resources for Caregivers PHA is continuing to implement new programs and resources based on your feedback! We’ve recently launched two new offerings for caregivers: Resources for Family and Friends Free Information Packet Are you or someone you know a caregiver to a PH patient? PHA now offers a free information packet, Resources for Family and Friends, to resources help caregivers plan their next steps for family after a loved one’s PH diagnosis, find & friends important resources and connect with other caregivers. To order your free packet, visit www.PHAssociation.org/ CaregiverPacket. ion ens ry hypert pulmona on on, ort, Caregivers Telephone Support Group PHA now offers a monthly Caregivers Telephone Support Group. Family and friends of PH patients “meet” by phone on the third Wednesday of every month to learn and share about caring for a loved one with PH. When: Every third Wednesday of the month. The next three calls will be Oct. 19, Nov. 16 and Dec. 21, 2011. What Time: 1:30 pm ET/10:30 am PT How do I join? Join the call by dialing toll-free 1-866-7401260. When prompted, enter access code 5653004. What topics? The topic changes monthly! Check the schedule anytime at www.PHAssociation.org/ Caregivers/Support. For more details or to learn about more resources for caregivers, check out www.PHAssociation.org/Caregivers or contact Michal at [email protected] or 301-565-3004 x800. PHA is grateful to Gilead and the Jansen Family Foundation for their support of the Kerry Bardorf Family Support Program. 10 www.PHAssociation.org PATHLIGHT fall 2011 Health Matters A s k a P H Sp e c i a l i s t each issue, Pathlight features a question from our PH community and its answer from a PH specialist. Send us your questions, keeping in mind medical professionals can only address general topics that are not specific to individuals. Email AskaDoc@ PHAssociation.org or call 301-565-3004. Q: How should I deal with my line and pump when I’m taking a nonPH medical test like a CAT scan, MRI or mammogram? A: In this day and age, for patients with even advanced pulmonary arterial hypertension (PAH) requiring infusion therapy such as intravenous epoprostenol (FlolanTM) or treprostinil (RemodulinTM) or subcutaneous treprostinil, life goes on. And that often means undergoing a variety of non-PAH related medical procedures. Among the most common of these procedures are radiographic studies such as chest x-rays, CAT scans, mammograms and MRIs. With the exception of MRIs, these procedures are readily compatible with PAH infusion therapies, including indwelling catheters, tubing, pumps and the medications themselves. Of course, it is critical that the patient continues to be his or her own biggest advocate, taking the same meticulous care of their therapy and its delivery system during these procedures as they do in all aspects of their day-to-day life. In addition, it is a good idea to inform the staff overseeing the procedure of the importance of the therapy and familiarize them with the delivery system. This will allow them to take the proper precautions to avoid, for instance, the tubing being tugged during the procedure. The need to undergo an MRI, on the other hand, raises a number of challenging issues. Chief among these is that the magnet lying at the heart of an MRI scanner is generally not compatible with outside metal objects. Unfortunately, there have been instances when outside metal objects have mistakenly been brought into an MRI scanner, turning the objects into projectiles capable of inflicting injury and equipment PATHLIGHT fall 2011 damage. Accordingly, the following steps are recommended when a patient on infusion therapy for PAH is scheduled for an MRI: 1. Ask the question: is the MRI absolutely necessary? Often a CAT scan or other imaging study is an acceptable substitute and does not carry the same risks to the therapy delivery system. 2. If the MRI is deemed necessary, the MRI department should be contacted well in advance of the scheduled procedure to make arrangements. Typically this involves fitting extralong tubing to the patient’s pump and catheter to allow for uninterrupted infusion of the therapy with the pump being kept safely outside of the MRI room. 3. It is important that an experienced provider supervise the incorporation of the extra-long tubing to avoid inadvertent medication bolus or prolonged interruption of medication. Possible providers include a PH specialty nurse, an IV team member, a specialty pharmacy representative or an experienced floor nurse. 4. Once the scan is complete, the tubing can be changed back to its normal length. If these simple precautions are taken, an MRI can be performed safely. As is so often the case, a little foresight and preparation goes a long way to preventing any problems. Don’t hesitate to ask your PH care team to help. w Answer provided by Michael Mathier, MD, Associate Professor of Medicine and Director of the Pulmonary Hypertension Program at the University of Pittsburgh Medical Center, Pittsburgh, Penn. Patient-to-Patient Support Line: 1-800-748-7274 11 HEALTH MATTERS Meet the Doctor Meet Dr. Paul Fairman: Furthering PH Education on the Road D r. Paul Fairman is the Director of the Pulmonary Hypertension Service and a Professor of Medicine at Virginia Commonwealth University in Richmond, Va. He became interested in PH in 1991 when he met his first PH patients while working in a lung transplant program. Dr. Fairman currently serves as National Committee Chair for the PHA on the Road: PH Patients and Families Education Forums. He chaired the four PHA on the Road programs in the spring of 2011 and is looking forward to chairing, planning and attending two more programs in the fall of 2012. Dr. Fairman recently took time to talk about his involvement in spreading awareness and education about PH. You specialize in pulmonary and critical care medicine. What sparked your interest in PH? I enjoyed thinking about the hemodynamics (pressures and blood flow) of PH and how they created symptoms and signs that were different from other lung and heart problems. I was curious about the various disease states that lead to PH. And I was captivated by the thought that there might be ways to treat PH other than transplant. Our first success came in a group of patients with obesity-related sleep apnea causing PH. Successful surgery for weight loss resulted in resolution or substantial improvement of PH in most patients. You’ve been working in the field of PH for a long time. Do any cases or patients really stand out to you? There are many: Lindsey, Angela, Robert, “Pinkie,” Gwen, Melvin, Gayle, Bonnie and many more. Each of them has a unique story and has taught our team something about the disease, its treatment, and the resilience and resourcefulness of those with this disease. One special woman taught me not to underestimate the capacity of patients to manage this disease. She was in her mid-60s when her diagnosis of idiopathic PAH was confirmed. We agonized over starting epoprostenol (the only treatment at the time). It seemed like it would be too much of a burden for her and her partner. We worried about her ability to care for her catheter and operate the pump. Despite our concerns, she thrived on the drug, had no “pump 12 problems,” maintained her catheter without any infections and remained independent until her death nine years later. Patients can, with the help of family and friends, team up to fight PH. It is very rewarding to be a part of a patient’s team. How did you become involved with PHA? I stopped by PHA’s booth at an American College of Chest Physicians national meeting. I was curious: who is this group and can they really help our patients and their families? I was impressed by the enthusiasm of those at the booth and their knowledge. Their goals to connect patients, provide accurate information and lobby for additional research made sense. And when I went to a national PH meeting, I was “hooked.” What do you enjoy most about working with PHA and the PH community? Meeting the people who create the fine programs and materials we have come to depend on for our patients and their families. I am fascinated by the stories of PHA’s staff and amazed by their seemingly boundless energy. You are currently the PHA on the Road National Committee Chair and have participated in planning a number of forums. What impact has this had on you and what have you enjoyed most? First, I am more deeply aware of the enthusiasm and dedication of PHA staff members who plan, organize and develop these programs. Second, I learn from the experience and expertise of the speakers and leaders at each program; I hear how they teach “PH” and organize their clinical care. Third, I get to hear more stories from more patients and family members about their “walk” on the PH pathway. What’s the most important piece of advice you give to your PH patients? Pulmonary hypertension is a team event. You need to involve your spouse, family, friends and connect with your doctor, nurse, specialty pharmacy nurse, physical therapist, PH support group. Learn all you can about this disease and how you, and your team, can fight it … together. w Interview conducted by Meghan Finney, PHA Patient Education Manager www.PHAssociation.org PATHLIGHT fall 2011 medical professionals Research corner Note from Pathlight Medical Editors: The Research Corner provides an update on a specific area of PAH research. When the research is scientific, such as the article featured below, the language may be difficult for non-medical professionals to understand. In this article, Dr. de Jesus Perez describes some of the latest discoveries governing the control of cell function which is abnormal in PAH. Of particular note are the systems that control the cells lining the pulmonary blood vessels (pulmonary artery endothelial cells – PAECs) and the muscle cells that comprise the wall of those blood vessels (pulmonary artery smooth muscle cells – PASMCs). Understanding these abnormalities of cellular control mechanisms may ultimately lead to potential targets for new therapies for PAH. The Questions: 1. What are the molecular mechanisms behind the protective role of bone morphogenetic protein (BMP) signaling in the pulmonary circulation? 2. Is recruitment of the Wnt signaling pathways associated with the protective effect of BMP in the pulmonary circulation? 3. What are the functional consequences of disrupting BMP and Wnt signaling in pulmonary smooth muscle and endothelial cells and do they relate to the pathology of pulmonary vascular disease? Past Studies: One of the key pathological features of idiopathic pulmonary arterial hypertension (IPAH) is progressive loss of small (<50µm) distal blood vessels and abnormal vascular remodeling characterized by accumulation of smooth muscle cells in the medial layer of affected vessels resulting in luminal obliteration and obstruction to blood flow. Since the discovery of the link between familial and sporadic PAH and loss of function mutations in the bone morphogenetic protein receptor (BMPR) 2, a key player in the BMP signaling pathway, much work has been devoted to understanding how this pathway is involved in preservation of pulmonary vascular homeostasis and how its disruption can result in PAH. However, despite its definite link with PAH, only 20 percent of those who carry mutations in BMPR2 develop the disease suggesting that other genetic and/ or environmental modifiers are required for disease development. In 2009, we published a scientific study that established for the first time that BMP, in a BMPR2 dependent fashion, can protect pulmonary artery endothelial cells (PAECs) against injury and promote regeneration of small vessels by co-activation of two different Wnt signaling pathways: the Wnt/β-catenin (βC), which promotes growth and survival, and the Wnt/ planar cell polarity (PCP), which coordinates their motility and ability to assemble into vessels. The Wnt signaling pathways have been shown to regulate various aspects of cellular behavior ranging from cell fate decisions to growth and survival of cells in adult tissues, and disruption of their normal function can result in a wide variety of disorders including cancer and heart failure. In the present work, we wanted to explore whether cooperation between the BMP and Wnt pathways is also necessary to regulate pulmonary artery smooth muscle cell (PASMC) response following vascular injury and whether disrupting this interaction could lead to increased smooth muscle cell (SMC) accumulation in a mouse model of endovascular injury. HEALTH MATTERS BMP Promotes Motility and Represses Growth of Smooth Muscle Cells by Activation of Tandem Wnt Pathways This Study: We discovered a novel cell-signaling paradigm in which bone morphogenetic protein 2 (BMP2) consecutively and interdependently activates the Wnt/βC and Wnt/PCP signaling pathways to facilitate PASMC motility while simultaneously suppressing their proliferation. This pattern of Wnt activation is different from that seen in PAECs where BMP mediated activation of each Wnt pathway is independent of the other. Using a combination of cell-based experimental approaches, we found that BMP-2, in a BMPR2 dependent fashion, could induce SMC motility via the βC dependent production of fibronectin (FN), an extracellular matrix component that not only provides anchorage to SMC but also serves to enhance SMC migration by the activation of Wnt/PCP signaling. However, addition of selective antagonists of FN as well as loss of function mutations in disheveled (Dvl), a key component of the Wnt/PCP pathway, resulted not only in loss of SMC motility but also increased cell proliferation. Interfering with the Dvl-dependent Wnt/PCP activation in a murine stented aortic graft injury model resulted in extensive neointima formation and luminal obliteration as shown by optical coherence tomography and histopathology that was reminiscent of PAH vascular pathology. The Bottom Line: Based on our findings, we postulate that, in response to injury, factors that subvert BMPR2 mediated activation of Wnt/βC and Wnt/PCP pathways contribute to obliterative vascular disease in both the PATHLIGHT fall 2011 research corner continued on page 15 Patient-to-Patient Support Line: 1-800-748-7274 13 HEALTH MATTERS News from the network Meet the New Members of the PHPN Executive Committee T his September, the PH Professional Network (PHPN) Executive Committee welcomed three new members, who will serve as the leaders of their respective committees for the next two years. Glenna Traiger joins us as Chair of the Membership Committee, Frances Rogers as Co-Chair of the Symposium Committee, and Gerilynn Connors as Chair of the Practice Committee. PHPN is becoming a powerful resource for allied health professional education and networking within PHA. Meet Glenna, Fran and Gerilynn! Glenna Traiger, RN, MSN, University of California Los Angeles, Los Angeles, Calif. How did you begin working in the field of PH? I was the Cardiovascular Clinical Nurse Specialist at USC University Hospital in Los Angeles when Dr. Shelley Shapiro came to USC to start the PH program there. I was looking for new challenges, and she needed help with that program, so we found each other. We built a strong program there and then moved across town to the Veterans Administration Greater Los Angeles Healthcare System and UCLA. I have now been working with PH patients for 12 years. 1. 2. What is your area of expertise? I work with both a cardiologist and pulmonologist so we see a variety of adults with PH. We also have an active research program. My role in the research program is to teach patients and family members about research and explain any PH studies they may be candidates for. I work closely with our research coordinators at the VA and at UCLA. I am also a study coordinator for the REVEAL Registry (Registry to Evaluate Early and Long Term PAH Disease Management) and have collaborated on some investigator-sponsored studies in PH. 3. How long have you been active with PHA, and what PHA programs or activities have you been involved with? My involvement with PHA spans at least the last 10 years. I have served as a member of the PHPN Membership Committee for the past few years, prior to taking on this role as Chair. Over the years, I have attended and spoken at PHPN Symposia and participated in Advocacy Days on Capitol Hill. I have served as a speaker for PHA on the Road forums, PHA’s International PH Conference, and webinars for newly diagnosed PH patients. I have also helped to revise the drug chapter in Pulmonary Hypertension: A Patient's Survival Guide and served on the editorial board for the medical journal Advances in Pulmonary Hypertension. Additionally, I have been a support group leader for more than 11 years with the USC PH Support Group and then West LA PH Support Group. Frances Rogers, MSN, CRNP, Hospital of the University of Pennsylvania, Philadelphia, Penn. 1. How did you begin working in the field of PH? My interest in PH began in July 2007 when the Hospital of the University of Pennsylvania opened its own PH program under the direction of Dr. Paul Forfia. I had been working with Dr. Forfia as a nurse practitioner in the heart transplantation program there prior to that and wanted to become part of the PH program at the “ground level.” I realized this was a dynamic field and wanted to learn more about it as well as how I could use my expertise as a nurse practitioner to help PH patients and their families. I have been the Clinical Coordinator of Penn’s PH program since summer 2007. 2. What is your area of expertise? I would certainly say my area of expertise is in the clinical arena, as we care for PH patients both in the outpatient and inpatient settings. In my position, I am also involved in pertinent clinical research because, as an academic institution, research is a big part of what we do. 3. How long have you been active with PHA, and what PHA programs or activities have you been involved with? My involvement with PHA began in 2007. I have been a member of the PHPN Symposium Committee since 2009 and have attended the PHPN Symposium, including Advocacy Day on Capitol Hill. Also, I co-lead a PH patient support group with Chris Archer–Chico, CRNP, through Penn. Presbyterian Hospital (part of the University of Pennsylvania hospital system). Story continued on next page 14 www.PHAssociation.org PATHLIGHT fall 2011 Story continued from previous page 1. How did you begin working in the field of PH? I am a respiratory therapist and have been working in pulmonary rehabilitation for more than 25 years. I have had the privilege of working with PH patients in pulmonary rehabilitation for eight years. I worked with my first PH patient in 2003. In 2003, our pulmonary rehabilitation program received our first referred PPH patient being worked up for lung transplant at Inova Fairfax Hospital. At that time, there was no literature about exercise and pulmonary rehabilitation in PH patients. The only published information then was from the 1998 National PR Guidelines by the American Association of Cardiovascular and Pulmonary Rehabilitation (AACVPR) which had a short paragraph on PPH and pulmonary rehabilitation, stating “no exercise prior to transplant, exercise after lung transplantation.” Since then, I have been fortunate to have been an editor and writer of these national guidelines and have seen the role of pulmonary rehabilitation for the PH patient gain evidence and purpose. But we still have a long way to go to show stronger evidence that research corner continued from page 13 systemic and pulmonary circulations. This is relevant to understanding PAH pathogenesis as the current paradigm proposes that endovascular injury may trigger endothelial cell death with subsequent loss of small vessels and increased expansion of PASMCs in the wall of the pulmonary arteries which would then increase pulmonary pressures. Our studies strongly support a collaborative role for Wnt pathways in BMP mediated protection of the pulmonary vasculature and stress the devastating impact that disruption of these pathways can have on proper vascular regeneration and healing following injury. Our future studies will center on applying genetic and pharmacologic strategies to reverse and/or prevent development of PAH in animal models with dysfunctional BMP and Wnt signaling. Where to find this article: The Journal of Cell Biology, Vol. 192, Number 1, 171–188 w By Vinicio A. de Jesus Perez, MD, Stanford University Adult PH Clinic, Stanford University Medical Center, Stanford, Calif. 2. What is your area of expertise? My area of expertise is clinical. I am a respiratory therapist working in pulmonary rehabilitation. 3. How long have you been active with PHA, and what PHA programs or activities have you been involved with? My involvement with PHA began in 2007. Since 2007, I have served as a member of the PH Professional Network Practice Committee and authored articles for Pathlight and Advances in Pulmonary Hypertension. I have also served as a committee member and speaker at the PHA on the Road forums, a committee member for PHA’s Insurance Program, and have presented webinars on various topics. Lastly, I’ve spoken at educational sessions and presented abstracts at PHA’s International PH Conference and PHPN Symposium. w HEALTH MATTERS Gerilynn L. Connors, BS, RRT, FAACVPR, FAARC, Inova Fairfax Hospital, Falls Church, Va. pulmonary rehabilitation in PH is an adjunct therapy that can improve six-minute walk tests, activities of daily living and the patient’s quality of life. D ISCLAIMER We encourage readers to discuss their healthcare with their doctors. This newsletter is intended only to provide information on PH/PAH and not to provide medical advice on personal health matters, which should be obtained directly from a physician. PHA will not be responsible for readers’ actions taken as a result of their interpretation of information contained in this newsletter. Transplant Focus Group Forming Email Group Expanding I f you are a transplant survivor, we want to hear from you. PHA is creating a focus group of patients who have had an organ transplant to help us learn more about your specific needs. We will use this information to improve our transplant resources and our ability to support patients before, during and after transplant. To get involved in this effort, email Meghan Finney at [email protected] or call 301-565-3004 x744. Check out PHA's transplant email group. In this email group, members share their experiences and ask questions about transplant. The group includes patients awaiting transplant, transplant survivors, caregivers and others interested in transplant. For more information or to join the transplant email group, contact Transplant@ PHAssociation.org or 301-565-3004 x744. w PATHLIGHT fall 2011 Patient-to-Patient Support Line: 1-800-748-7274 15 HEALTH MATTERS “ H e l p f u l h i n t s ” f r o m t h e ph p r o f e s s i o n a l n e t w o r k Looking for a Pulmonary Hypertension Specialist in Your Area? Check out PHA's Updated Find a Doctor Directory PH patients are encouraged to seek care from doctors with experience and expertise in PH, and PHA's recently expanded and updated Find a Doctor Directory is designed to assist you in locating and identifying such doctors. The Directory is a database of members of PHA’s medical membership network for physicians, PH Clinicians and Researchers (PHCR). How to Use PHA’s Find a Doctor Directory The information included in PHA’s Find a Doctor Directory has been provided by the listed doctors, and PHA does not specifically endorse any physician listed. But to help you to make your own assessment of their qualifications, PHA’s Scientific Leadership Council* has created two tools: an instructional video and a guide to help you navigate the process of choosing a doctor that is qualified to manage your pulmonary hypertension care. These tools reference several key questions that you should ask when evaluating a physician. Some of those questions include: • What year did you begin caring for patients with pulmonary hypertension? • How many patients with pulmonary hypertension do you take care of in your practice currently? • Do you have a specific nurse dedicated to assisting in the care of pulmonary hypertension patients? • Do you require all patients to undergo cardiac catheterization prior to prescribing a therapy for pulmonary arterial hypertension? • Do you currently provide access to all PAH therapies including prostanoid therapy (inhaled as well as injectable) to your patients? For a full list of questions, as well as to access the video, visit www.PHAssociation.org/Patients/ FindaDoctor w *Members of PHA’s Scientific Leadership Council are clinicians and research scientists in medical centers recognized for performing outstanding research and providing excellent care for patients with pulmonary hypertension. Its members provide medical and scientific leadership and guidance to support the mission of the Pulmonary Hypertension Association and lead the development of the wide array of PHA’s medical programming. Welcome, Rebecca Kurikeshu, MPH, Medical Outreach Program Associate! As Medical Outreach Program Associate, Becky is responsible for serving the members and promoting membership in PHA’s PH Clinicians and Researchers medical membership network. She also works with PH medical professionals to develop and expand resources that will advance the PH community. In addition, she assists in organizing the Scientific Sessions at PHA’s biennial International PH Conference, develops the monthly Research Roundup e-newsletter, and manages PHA’s Research Program. Becky can be reached by email at [email protected] or phone at 301-565-3004 x776. Welcome, Alisa Goldman, Allied Health Program Associate! As Allied Health Program Associate, Alisa is responsible for promoting membership in PH Professional Network and helping to develop the group’s knowledge and other resources in ways that will benefit the entire PH community. She provides assistance and support to each of the group’s five leadership committees as they work toward meeting their goals. Alisa also assists in organizing PHA’s biennial PH Professional Network Symposium, the largest educational event in the field for PH allied health professionals. Alisa can be reached at [email protected] or 301-565-3004 x761. 16 www.PHAssociation.org PATHLIGHT fall 2011 Adv a n c i n g t h e c a u s e Put YOUR State on the Map! Get Local Media Coverage During Awareness Month T he summer issue of Pathlight included a challenge to the PH community: Get news coverage in 35 states by Sept. 1. Over the summer, PHers received 35 new media stories in 10 new states, which brought the total number of pulmonary hypertension media stories to 73 in 31 states, and as we go to press, stories are still coming in! Sharing your story with the media is a powerful way to reach a wide audience. Educate, empower and provide hope to your community this November: Share your personal PH story with a reporter during PH Awareness Month! Be the first to put your state on the map with a media success or add your own star in the challenge to see which state will have the most PH media coverage. Even if your state already has a media victory, the power of your story will still make a huge impact to those in your community who are unfamiliar with this rare disease. The states listed below have not had a PH media story yet this year. For tips and resources to start you on the way toward a media success (and a star on your state), contact Elisabeth at 301-565-3004 x753 or Elisabeth@ PHAssociation.org or visit www.PHAssociation.org/ Awareness/50StateMediaChallenge In the meantime, get inspired by a few of the newest media victories! The following stories showcase the creativity of PH community members who used their interviews to talk about their involvement in special events and support groups, in addition to their experience with pulmonary hypertension: Support Group Leader Puts Focus on Special Event (New Jersey) — PH patient and local support group leader Melanie Kozak was diagnosed with PH 14 years ago. A reporter at The Sentinel interviewed her about her experience with PH and the fun walk held in honor of Olivia Marie, a young PH patient who’s been battling the rare disease since birth. After seeing her article in print, Melanie exclaimed, “Now I am going to contact another event organizer in New Jersey to see if I can try to be their media advocate!” Art Show Held in Maritza's Memory (New Jersey) — Alice Matiz spoke to reporters about her special event in memory of her sister, PH patient Maritza. The June 11 art show featured Maritza’s artwork and the work from three other local artists. “My sister was feisty, talented, intelligent, and believed in speaking her mind. I want to keep her memory alive,” Alice told the news organization Hudsonreporter.com. Two PH Patients Discuss Life with PH (Texas) — PH patients Yvette Pedroza and Stuart Berwick were interviewed in their local newspaper about issues that affect most PH patients, including misdiagnosis, the expense involved in managing the disease, their medications and their relationship with their caregivers. “I think going in as a pair was really beneficial because we were able to fill in gaps for each other … Also, the article stressed the fact that I came from Dallas for the interview in Lubbock/Plainview to try and help Yvette and her family. It really showed the willingness of PH patients to help each other,” says Stuart. w Add your state to the map! These states need stars in our media map to the right. Alabama Maryland North Dakota Alaska Michigan Oregon Arizona Nebraska South Carolina Arkansas Nevada Vermont Connecticut New Hampshire West Virginia Idaho New Mexico Wyoming Illinois New York PATHLIGHT fall 2011 Join other PHers working with the media: Put your state on the map! Patient-to-Patient Support Line: 1-800-748-7274 17 a d van c in g the c a u se Giving Every Month — and Beyond — In Honor of Her Sister A s one of PHA’s newest holidays throughout the year. “Even Sustainers Circle monthly though I wasn’t actively fundraising, donors, Lucia Martuccio my family and friends wanted to knows how important PHA’s make these donations because programs and services are they knew how much they meant to to the PH community: her me and Maria,” Lucia says. sister, Maria, was diagnosed Earlier this year, Lucia had with idiopathic pulmonary the opportunity to participate in the hypertension in July 2004. Dick’s Sporting Goods Pittsburgh Lucia’s monthly gift is just one Marathon. “Everyone who knows of many ways she, along with me knows I’m not a runner, I’m not her entire family, supports athletic,” Lucia says. “More people Lucia (left) and Maria Martuccio Maria’s ongoing battle with PH. than ever asked me about PH while In 2003 Maria was a healthy young woman, “but I was training.” In just three weeks, Lucia raised $1,833 all of a sudden she was short of breath with minimal through a Web of Friends page, and she completed her exertion, she was dizzy all the time and was having first half marathon on May 15, 2011. problems with simple daily tasks that we all take for In recognition of “going the extra mile” for Maria by granted,” Lucia says. During a monthlong heart monitor running a half marathon, Lucia also signed up to make a test, Maria passed out for nine minutes and was monthly gift to PHA through the Sustainers Circle. “It was immediately rushed to the hospital. The doctors kept simple — it took a whole three minutes to sign up. It is saying, “Her condition is very interesting,” and after many, also so effortless, because I don’t have to remember many tests and a few incorrect diagnoses, Maria was to make a donation. I know my monthly gifts will help finally diagnosed with IPAH. bring the greatest gift — finding a cure for Maria and her Not long after her diagnosis, Lucia and Maria PHriends,” Lucia says. became involved in the PHA community. Lucia volunteered The sisters are already brainstorming their next to participate in the Cleveland Area Pulmonary events: perhaps they’ll host a pasta dinner (their mom’s Hypertension Support Group (CAPHS) Annual Walk & Roll sauce is the best!), help their dad and brother organize for a Cure and, after quickly browsing the “Get Involved” a classic car show with proceeds donated to PHA, or section of PHA’s website, Maria started her own Web lobby for a PH license plate in their home state of Ohio. of Friends personal fundraising page. Both sisters then “Maria is the inspiration for all I’ve done and all my family started soliciting donations from family and friends in continues to do to raise awareness of this disease,” Lucia support of PHA’s programs and services. says. After a conversation with a co-worker, inspiration Interested in learning more about PHA’s Sustainers struck again: Lucia decided to throw her own 30th birthday Circle or brainstorming other unique ways to get involved? Contact Jennifer at [email protected] or party and, in lieu of presents, asked for gifts to PHA 301-565-3004 x756 or visit www.PHAssociation.org/ in honor of her sister. “This way I knew I’d get exactly Donate/SustainersCircle w what I wanted,” Lucia says. The birthday donation trend st continued with Lucia’s 31 birthday, as well as other By Jennifer Kaminski, PHA Development Manager Welcome, Haley Elmers, Executive Program Associate! As the Executive Program Associate, Haley is part of the team that supports the work of PHA's president. Haley serves as the primary liaison to PHA's Board of Trustees, maintains PHA's historical archives, coordinates PHA’s internship program and assists with other projects that are of priority for the president and the organization. Haley graduated with a B.B.A. in Marketing and International Business from Baylor University. She can be reached at [email protected] or 301-565-3004 x801. 18 www.PHAssociation.org PATHLIGHT FALL 2011 When Is the Perfect Time to Support PHA at Work? Right Now! • Host a workplace fundraiser From raffles and rummage sales to ice cream socials and potluck lunches, PHA’s Our Workplace Has a Heart kit offers creative ideas for hosting a fundraiser (and awareness-raiser!) at your workplace. When you request a copy of the kit, you’ll receive a colorful, easy-to-use binder filled with everything you need to plan a fun and successful event. The kit includes step-by-step instructions for easy fundraising events; a CD-ROM full of customizable templates; and everything you’ll need to plan PHA’s signature workplace fundraising event, Blue Jeans for PH. • Give to PHA at work Many employers host charitable fund drives in the fall, and you may be able to designate PHA as the recipient of your pledge. Check to see if your employer participates in the United Way, or if it holds its own fund drive and encourage your co-workers to pledge to a charity that means so much to you. One of the country’s biggest fund drives is the Combined Federal Campaign (CFC), for employees of the federal government, postal service, and members of the military. ADVANCING THE CAUSE Here are a few ways you can raise funds and awareness at your workplace: • See if your employer will match your gifts to PHA Some companies offer employee matching gift programs, which means every gift you give to PHA can be doubled or even tripled. Ready to get started? Workplace events are great any time of year, but November is the perfect time to support PHA at work because it’s PH Awareness Month! Visit www.PHAssociation.org/Fundraise/AtWork or call 301-565-3004 x756 to request PHA’s free Our Workplace Has a Heart kit or for more information. IN 1998, JANE COOPER HEARD NEWS THAT CHANGED HER LIFE. SHE RESPONDED BY CHANGING THE LIVES OF 30,000 OTHERS. “This disease is not cool,” was the diagnosis her doctor delivered. They’re also the words that sent Jane and her family into action. While Jane was hospitalized for low oxygen levels, her husband Harold went to work researching PH and discovered an upcoming international conference on the Pulmonary Hypertension Association’s website that very weekend. Although her scheduled release was still days away, Jane’s response was, “We have to go.” Follow Jane’s fight, and her family’s relentless support, at PHAssociation.org/Give/JaneCooper Like Jane Cooper, you can strike a blow against PH by designating PHA as a legacy beneficiary. Your contribution will help shape a brighter future for all those affected by PH. For details, call us at 301-565-3004 x767, or email [email protected]. Visit our website for more information at PHAssociation.org/Give. PATHLIGHT FALL 2011 Patient-to-Patient Support Line: 1-800-748-7274 19 ADVANCING THE CAUSE Meet ANHP (Spain) and the Israel PH Association: International Winners of Tom Lantos Innovation in Community Service Awards T he Lantos Awards, named for the late Representative Tom Lantos, a long-time advocate in the fight against PH, are awarded to members of the PH community to help them implement innovative awareness-raising initiatives, grow PH community service programs or duplicate existing programs in another area. Two global PH associations, Asociación Nacional de Hipertensión Pulmonar (ANHP) and the Israel PH Association, have used their awards to hold seminars for medical professionals who want to learn more about the disease. These awards are sponsored by Gilead. Award Winner Profile: ANHP (Spain) Award Winner Profile: Israel PH Association by Juan Fuertes, ANHP Coordinator www.hipertensionpulmonar.es by Dr. Yosef Gotlieb, Board Member, Israel PH Association www.phisrael.org.il T P he Tom Lantos Innovation in Community Service Award has been a turning point in the psychological care of pulmonary hypertension patients in Spain. We have always promoted the principle of considering the PH patient as a whole, not just as a faulty organ. After publishing the guide “Emotional Aspects of PH,” we saw the need to involve health officials in this holistic view of the disease. The Lantos Award has given us the opportunity to organize the first Seminar on Psychological Care for PH Patients, which reached out to psychologists and psychiatrists in Madrid. On June 7, 2011, our organization brought together 12 psychologists and psychiatrists to discuss psycho-social needs in the field of PH, and this raised not only interest but real motivation and involvement on the part of the attendees. Irene Delgado, President of ANHP, says, “PH patients must get emotional support to face the fear of our prognosis, and we must have tools to reduce the challenges of this disease, which often impede access to jobs and make it hard to adjust to society. Psychological support is paramount for many patients in their struggle to make the most of their lives.” Attendees and panelists at the ANHP seminar PH patients are often placed at the bottom tier of the health system because of the small number of patients, and getting support from health officials has proved challenging. However, we found unexpected support through the Coordinator of the Regional Mental Health rimary care providers are often the first doctors to encounter a patient struggling with pulmonary hypertension. However, their lack of familiarity with the disease leads to misdiagnosis, delays in diagnosis and postponement in treatment for many patients. This realization prompted our conference, “PH: Profile of the Disease,” held at a Tel Aviv hotel on June 16, 2011, with nearly 100 clinicians and researchers in attendance. The sessions, which consisted of 40-minute lectures by specialists, featured highly focused briefings on different dimensions of the disease. Following each lecture, the floor was opened for questions from the audience. Lecture topics included when to suspect PH, types of PH, treatment options, the complexity of care and research on diagnosis and treatment. The hall was so packed with attendees that extra chairs had to be brought in so attendees could listen to Israel's top PH specialists lecture on the disease. Despite a physicians’ strike in Israel at the time, attendance at our conference was robust. One of the sessions, a panel discussion dealing with the complexity of care, included the director of a respiratory rehabilitation unit at a Jerusalem pediatric hospital, a family physician, a support group counselor, a technician providing home care support and a patient. Everyone agreed that awareness of PH among non-specialist physicians and clinical staff was imperative and that family physicians play a critical role in coordinating treatment across the various specialties and agencies involved in patient care. Our seminar, held on the Tel Aviv shore, also included several breaks that allowed participants, lecturers and PHA Israel board members to meet each other and network. Conversations continued over lunch, and following the meal, everyone returned for a final Story continued on next page 20 international news www.PHAssociation.org PATHLIGHT FALL 2011 Story continued on next page ISrael PH Association Story continued from previous page Office of Madrid, Dr. Gustavo Petersen, who contributed to the success of the seminar. After the seminar, we received a request from one of the public hospitals to fund research on the impact of psychological therapy in reducing morbidity and mortality of PH. One group of patients will attend group therapy while others will see psychiatrists on an individual basis. Their progress will be compared with a control group, and we expect to see a measurable difference in favor of the patients with psychological support. There is much more to do as we encourage physicians to diagnose the whole person whose quality of life is affected by the way they experience the disease, the limitations they face, the drugs they take and changes from one functional class to another. This first seminar on psychological care for PH patients, made possible by the Tom Lantos Innovation in Community Service Award, is a milestone in the evolution of PH care. As President Delgado says, “We have opened a door for new challenges: we are small and in dire need of funds, but we have hope and a strong will.” w session dealing with research horizons, including new possibilities in drug and cell therapies. One important outcome of the event was the formation of an Experts Council of PH specialists who will create policy and provide guidance on the diagnosis, treatment and follow-up of PH patients. Our conference, made possible by PHA’s Lantos Grant Program, was a resounding success, and we intend to continue a series of educational programs for the medical community. w ADVANCING THE CAUSE ANHP Story continued from previous page Attendees pack the room at the PH conference in Tel Aviv. Amazing Idea but Short on Funds? We’re Here to Help! Apply for a Tom Lantos Innovation in Community Service Award PHA is pleased to announce the third year of the Tom Lantos Innovation in Community Service Awards program. Named for one of the true heroes of the PH community and sponsored by Gilead, these awards support members of the PH community who are making a significant impact in the following ways: • • • Your amazing idea could be the perfect fit for this established grant program. As many as 10 awards of up to $5,000 each will be granted in 2012. In addition to the international award winners featured above, visit www.PHAssociation.org/ LantosAwards/2011 for a little inspiration from all of our 2011 award winners. And be on the lookout for announcements of Researching and developing opportunities for training on our website and innovative ways to raise in PHANews, PHA's biweekly e-newsletter. awareness and foster community Tom Lantos The application process opens on services in PAH; Tuesday, Oct. 11, 2011. Applications are due Friday, Extending the reach of an existing innovative Jan. 6, 2012, and winners will be announced in April program in PAH community services; or, 2012. For more information and to apply online, go to Reproducing an existing program in PAH www.PHAssociation.org/LantosAwards or contact community services in another geographic region [email protected]. w to address an unmet need. PATHLIGHT fall 2011 Patient-to-Patient Support Line: 1-800-748-7274 21 ADVANCING THE CAUSE A Mother's Journey Spans Continents: Martha Gonzalez Hopes to Persuade Ecuadorean Officials to Recognize PH I magine that your son was born with not one but two life-threatening congenital diseases, then was diagnosed with pulmonary hypertension when he was only a year old. Martha Gonzalez knows this scenario only too well. Her son, Daniel Torres, has been living with these life threatening conditions for more than five years. Martha has lived in the U.S. for more than 20 years, and now she is using her son’s example and all that she has learned about PH over the past five years to help other people in her native Ecuador. She is trying to convince officials in that country to add PH to the list of “catastrophic illnesses” for which the governmentfunded healthcare system will subsidize treatment. Turning fear into action When Daniel was diagnosed, rather than become immobilized by self-pity, the family met the challenges head-on and completely changed their way of life to become Daniel’s caregivers and closest allies. “We as a family have become closer than ever,” Martha says. For example, “when we go to clinic, my oldest son Sergio takes care of my youngest, Mia. Sergio is considered a third caregiver of Daniel — knowing all about PH, always asking about it. He also knows the doses of his medications and schedule.” Martha has maintained close ties with friends and family in Ecuador as well, which led her to launch a campaign to educate physicians about PH in that country. “My involvement with the Ecuador government is related to an awareness project that I have planned with countries in South America,” Martha says. “I began with Ecuador because I am originally from there.” The Ecuadorean embassy helped to arrange a visit in May with the directors of cardiology at Hospital Clinica Kennedy, Hospital Pediátrico León Becerra, and Hospital de Niños Dr. Roberto Gilbert Elizalde. “Groups of physicians invited me to sit with them in rounds, during diagnosis of patients, and also showed me their advanced cath labs,” Martha says. During those meetings, she was able to give the physicians informational material in Spanish regarding the disease. PHA provided her with material such as Pulmonary Hypertension: A Patient's Survival Guide, the medical journal Advances in Pulmonary Hypertension and information on the international seed grant program. 22 international news Martha (center) with the cardiac team at Hospital Clinica Kennedy “My impression was that all these physicians were very interested in PH,” she says. “Although some had heard of it, one hospital never had any case of it. In the pediatric centers, my visit coincided with the recent diagnosis of two children with PH.” Martha adds that she is pleased with the response of the physicians she visited, who are interested in coming to PHA’s 2012 International PH Conference and getting actively involved in the PH journey. Obstacles along the way Martha says she was “amazed” to discover that the only PH drug administered in Ecuador is sildenafil. As she began working to change government policy by communicating with Ecuadorean health officials, Martha encountered a number of obstacles. “I did my research and found that there was a list of catastrophic illnesses in Ecuador that included heart malformation and cardiac valve disease,” she recalls. “I called and emailed the authorities to inquire if PH could be included in this list, and they said only if the cardiac malformation causes PH at some point, as if it was secondary PH. I specifically asked what if it is genetic PH, and the answer was no. This disappointed me because if all cancers were included in this list, then why not PH? PH is incurable and, without treatment, is fatal.” She presented the example that if a person was born with no heart malformation and developed cancer later in life, treatment of the illness could be subsidized by the government. However, if a person was born with no heart malformation and 20 years later developed PH due to a mutation of one of his genes, then why could this person’s care not be subsidized? Martha is currently working with PHA on how best to approach the medical establishment and win the battle www.PHAssociation.org PATHLIGHT FALL 2011 Story continued on next page Wii and watch SpongeBob SquarePants. She wants people in other countries to so PH can be included in this list. experience this same care. “My goal is to put the word out “We enjoy every day with Daniel,” there, be a mom ‘on the road,’” she she says. “We feel we are blessed says. “I will fight for my own country’s to have found a great PH pediatric PH patients, and after that, I would center and PHA. We feel that PHA is love to move on to the rest of the our security blanket; if we have any countries in South America. I believe questions, we just call PHA and there that the only way to have subsidized Martha (left) with Dr. Roberto Cozzarelli, is always help there for us. Not all is help for the expensive therapies for PH Director of Hospital Leon Becerra bad for us. PH has brought out the best is by including PH in the catastrophic illnesses lists of these countries, especially in healthcare of us as human beings. We no longer feel hopeless, we now feel hopeful for the cure.” w systems funded by governments.” Story continued from previous page By Edward Freundl, PH Patient and Volunteer Writer To read the full story of Martha's family and her work in Ecuador, visit www.PHAssociation.org/Awareness/ CommunityEducation International Highlights: What’s Going on Around the World? W ith more than 50 PH associations worldwide, there have been some exciting developments in the global PH community. These international highlights are a testament to the hard work of PH community members everywhere! • In Canada… PHA Canada’s two-day PH conference occurred on Sept. 16-18, 2011, in Toronto. The conference brought together patients, caregivers and medical professionals from around the country under the theme of “Uniting the PH community coast to coast.” Topics varied from the basics of PH to coping with the disease. • In Germany... The German PH association, ph e.v., celebrates its 15th year in operation in 2011 and the Rene Baumgart-Stiftung Foundation, the PH research foundation operated by Phe.v., will celebrate its 10year anniversary! • In Israel… The first-ever PH special event in Israel, a Yarid Shira carnival, was held in memory of PH patient Shira Dunur on July 1, 2011, with the proceeds going to PHA Israel. • In Italy… AIPI, one of the two PH associations in Italy, celebrated its 10th anniversary this year! ADVANCING THE CAUSE Hope for a cure Martha says that even though her son Daniel is just beginning to comprehend what’s going on with his health, she is thankful for their private insurance and the daily medications that allow him to be just like any other 5-year-old boy who loves to run, jump, swim, play international news • In Korea… PHA Korea has officially been granted nonprofit status. The group began with a PAH blog in 2006, and the organization is now working toward raising awareness of PH in the medical community, the general public and the Korean health department. • In New Zealand… The New Zealand PAH Trust association has become PHA’s newest MOU-holding partner! PHA’s Memorandum of Understanding program has united 26 associations in formal partnership to date. • In Norway… PHA Norway, through a Lantos Grant sponsorship, held its first meeting for patients and caregivers near Oslo on Sept. 24-25, 2011. Stay tuned for more information in the next Pathlight! • In Paraguay… A one-day PH conference for medical professionals was held on June 30, 2011, by the Asociación Latinoamericana del Tórax. Educational programming targeted cardiologists, clinicians and rheumatologists among other medical professionals. For more news from around the world, visit www.PHAssociation.org/PHInternational w By Meghan Tammaro, PHA International Services Manager PATHLIGHT fall 2011 Patient-to-Patient Support Line: 1-800-748-7274 23 ADVANCING THE CAUSE In surance Finds: Five Tips for Parents of Children with PH T his past summer, Caring Voice Coalition (CVC) presented a webinar to the PHA community on how to obtain and maintain insurance coverage for your child. If you missed it, visit www.PHAssociation.org/ Insurance/PediatricCoverageWebinar to see the recording. Until then, here are five tips from CVC: 1. Keep coverage until age 26. The Affordable Care Act now requires that dependents have the option of staying on a parent’s insurance plan until the age of 26. That means that if you have private insurance, you don’t have to worry about finding insurance coverage for your child until their 26th birthday. 2. Utilize COBRA and Mini-COBRA. If you lose your employee-based insurance, the Consolidated Omnibus Budget Reconciliation Act (COBRA) gives workers and their families the right to choose to continue group health benefits provided by their health plan for limited periods of time under certain circumstances. If you don’t qualify for COBRA because your employer has fewer than 20 workers, some states offer a Mini-COBRA plan, a state version of regular COBRA. 3. Explore CHIP eligibility. If your family makes too much money for your child to qualify for your state Medicaid, your child may still qualify for your state’s Children’s Health Insurance Program (CHIP). Most state CHIP programs cover children in households with incomes up to 200 percent of the federal poverty level. Some states coordinate their CHIP enrollment separately from their Medicaid enrollment, so don’t assume your child doesn’t qualify for CHIP just because he or she is denied Medicaid. Can’t wait another three months for more insurance news? Sign up for PHA’s Coverage Connection and get your regular insurance fix with monthly email updates. To subscribe, visit www.PHAssociation.org/EmailSubscriptions 24 4. Apply for Supplemental Security Income (SSI). Children under the age of 18 can apply for SSI, an income-based benefits program administered through the Social Security Administration. A child who gets SSI benefits can also get Medicaid to help pay medical bills. When they turn 18, your son or daughter will need to reapply for SSI as an adult. 5. Caring Voice Coalition can help! Whether it’s counseling about your child’s SSI application or financial assistance for increased COBRA premiums, CVC provides free assistance to the pulmonary hypertension community. Call 1-888-267-1440 or visit www.caringvoice.org. Visit www.PHAssociation.org/Patients/Insurance for more insurance information. Or, contact 301-5653004 x773 or [email protected] with general insurance questions. w By Margaret Beardsworth PHA Insurance Manager Get PH community updates delivered straight to your Inbox! Sign up for PHANews, PHA's biweekly e-newsletter. To subscribe, visit www.PHAssociation.org/PHANews www.PHAssociation.org PATHLIGHT FALL 2011 A D V OCAC Y IN ACTION T he PH community continues to educate Congress and build support for the Tom Lantos PH Research and Education Act. Here are just a few highlights since our last issue: PHA on the Road Attendees Send 1,100 Letters to Congress PHA on the Road brings together a cross section of the PH community, each with a personal connection to the disease. This year, at each of four PHA on the Road forums, attendees wrote letters to their Members of Congress educating them about PH and requesting co-sponsorship of the Tom Lantos PH Research and Education Act. When PHA gathered all the letters to deliver them to Capitol Hill, we had more than 1,100! In one of those letters, a nurse practitioner talked about her patients: “I see their struggles and their fights with this chronic and terminal illness. ... We can make a difference by funding research opportunities.” The PH journeys of patients, caregivers, loved ones and medical professionals may be different, but together they paint a powerful picture of how this rare disease affects thousands of people. w Visit with Health LA Pays Off I never thought I could make a difference! ~ Joy Gore, PH Patient W hen Joy Gore attended PHA’s Congressional Luncheon in November 2010, she talked with Dvora Lovinger, Rep. John Sarbanes’ health legislative assistant, about what it’s like to live with PH. In June, Joy followed up with Dvora and requested that Congressman Sarbanes (D-MD) become a co-sponsor of the Tom Lantos PH Research and Education Act of 2011. Within a few days, he did! w Joy Gore (right) speaks with Health LA Dvora Lovinger. ADVANCING THE CAUSE Advocating Across the Country Perry Mamigonian Hosts Legislative Staff at Support Group Meeting P erry Mamigonian hosted a special guest at his August Support Group meeting: Anthony Ratekin, legislative staffer to Rep. Devin Nunes (R-CA). Perry’s group helped Anthony better understand what it’s like to live with PH and asked for Rep. Nunes’ co-sponsorship of the Tom Lantos PH Research and Education Act. Perry is just one of many PHers who took advantage of the August congressional recess to build co-sponsorship of our PH bill. Watch for more in the next Pathlight. w L to R: Support group members Jeri Lynn Austin and Sue Blomquist, legislative staff Anthony Ratekin, and Perry Mamigonian Inspired by these stories? Share your story with your Members of Congress and build support for the PH bill. Contact Elisabeth Williams at 301-565-3004 x753 or Elisabeth@ PHAssociation.org or visit www.PHAssociation.org/Advocacy/ConnectLocally PATHLIGHT fall 2011 Patient-to-Patient Support Line: 1-800-748-7274 25 called to say that Sen. Casey had agreed to sponsor the bill in the Senate. Since then, his office has provided invaluable support in advancing the PH community’s cause. This November, make the PH community’s story your story. You’ll find more information about making a difference during Awareness Month throughout this issue of Pathlight and at www.PHAssociation.org/AwarenessMonth2011 Alone, we are powerful. Together, we are unstoppable. w ADVANCING THE CAUSE Awareness Month Story continued from page 1 A story of one person’s power to bring about change: When Colleen Connor attended PHA’s Congressional Luncheon during Awareness Month 2009, she and her family were still learning about the details of the Tom Lantos PH Research and Education Act and why it is so important in promoting PH research and awareness. Nonetheless, Colleen went out on a limb to share her story with staff in Sen. Bob Casey’s (D-PA) office and request sponsorship of the PH bill in the Senate. Twenty minutes later, the staffer I nvite Y our M embers of C ongress By Katie Kroner, PHA Director of Advocacy and Awareness to PHA’ s C ongressional L uncheon ! I made my phone calls, and it sure felt good to be doing something positive for PH! ~ Laurie Johannsen after PHA’s National Call-In Day E ven Members of Congress appreciate a free lunch. That makes PHA’s Congressional Luncheon the perfect way for us to educate them about PH and secure their co-sponsorship of the Tom Lantos PH Research and Education Act. How do senators and representatives learn about the Congressional Luncheon? You invite them! Call Katie at 301-565-3004 x749 or visit www.PHAssociation.org/ GetInvolved/CongressionalLuncheon to: »» See current event details; »» Find a sample script for inviting your senators and representative; »» RSVP to attend this free luncheon on Capitol Hill. PH patients Conchita Watson (left) and Kimberlee Ford at PHA's 2010 Congressional Luncheon Welcome, Bob Gray, Director of Development! As Director of Development, Bob is responsible for increasing contributed income benefitting PHA programs by working closely with volunteers and staff to implement techniques such as direct mail, individual and foundation gifts, special events and cause marketing. He also works closely with PHA’s Development Committee and president to research and design funding techniques for new PHA programs. Bob can be reached at [email protected] or 301-565-3004 x767. Welcome, Ellie Falaris Ganelin, Design & Publications Associate! As Design and Publications Associate, Ellie assists in designing, editing and writing PHA’s many print and online publications. She is also the primary contact for Pulmonary Hypertension: A Patient’s Survival Guide, PHA’s resource book for patients and caregivers. Ellie works with volunteer contributors to update and publish the Survival Guide on a yearly basis. She can be reached at [email protected] or 301-565-3004 x812. 26 www.PHAssociation.org PATHLIGHT FALL 2011 Two Community Members Use Social Networks to Raise Awareness Kim Ford Launches PH Awareness Day What was PH Awareness Day? PH Awareness Day on July 8, 2011, was a day I wanted everyone in the world, regardless of their physical capabilities, to do something to spread pulmonary hypertension awareness. What was the response? The PH community responded in an overwhelmingly positive way. My goal was to get as many people involved as possible and for them to share the event with their friends and so on. First, I created an event page on Facebook; then I reached out to support group leaders, PHA email groups and lots of PH Facebook group pages. I think Facebook made it easy for everyone who wanted to participate to share the event with their family and friends. On the event page, 1,136 people confirmed their participation. I found out later that many more worldwide participated. The PH community was excited about this event, and they had so many great awareness-raising ideas. One caregiver’s sister gave a speech about PH to her class. One gentleman painted a chair and told people his PH journey as they walked by it. Another person want on a local TV show to talk about PH Awareness Day. Two people got tattoos! I was amazed at how many phoned their congressional leaders and emailed friends. How can tools like Facebook help the PH community raise awareness? PH Awareness Day was very successful because of Facebook. In the days leading up to July 8, so many people posted a link to the event page and used their Facebook status updates to share what they were planning to do for PH Awareness Day. On the day of, Facebook was flooded with people sharing what they were doing. People who did not have PH also helped to spread awareness. If more people are willing to use Facebook and other social networking sites to help spread PH Awareness on a daily basis, we can educate the world about pulmonary hypertension. Hopefully, this will lead to more funding and soon a medical cure. The PH community has to continue to empower each other to spread PH awareness. Brenda Reynolds Creates the PHAmerica Honors Ambassador Awards What is the PHAmerica Honors Ambassador Awards? It is an online awards competition. An ambassador is chosen to represent their peers in a specific category. Those ambassadors must then help promote our mission and be a voice for the PH community. How did you come up with the idea? I had a friend who was organizing a beauty pageant to help raise awareness for seat belt safety in honor of her daughter who passed away in a car accident. I always wanted to do something positive in memory of my niece, Kayla Marie Hosea, who lost her battle with PH in 2009. I also wanted an activity that was easy for the winners to do even if they were having a “PH” kind of day. That’s when I came up with the pageant, and PHAmerica Honors was born! ADVANCING THE CAUSE T his summer, PH community members Kim Ford and Brenda Reynolds took advantage of social networking websites to encourage others to raise PH awareness. The PH community responded in a BIG way! Read our interviews with both women to find out how Kim’s PH Awareness Day and Brenda’s PHAmerica Honors Ambassador Awards spurred PH awareness raising. What was the response? The PH community’s response was fantastic! It has been wonderful to use the Honors to help direct PHers to the awesome resources from PHA. Approximately 100 people participated. I received a ton of support from everyone, even those who did not enter. Lots of people went online and voted, wrote encouraging notes to the participants and were excellent examples of positivity, working together and understanding. The essays that were submitted were phenomenal. The judges had a very hard time choosing winning essays because each was strong in its own way. A big thanks to the judges for doing such a great job, and thank you to everyone who entered and supported this new venture! Who are the winners? PHAmerica Honors Ambassadors for 2011 include Jane Northrop, Sylvia Creach, Jhenna PacelliMacDonough, Nicole Northrop, Melanie Kozak, Jeannie Kendrick, Dave Rider and Joshua Griffis. w Online Tools to Help You Build Awareness • Kick off Awareness Month! Join the PH community on Nov. 1 for Online Awareness Day. www.PHAssociation.org/AwarenessMonth2011 • Use Facebook to Advocate to Congress! Visit www.Facebook.com/PulmonaryHypertensionAssociation and click “Take Action” on the left of your screen. • Join PHA Online Messengers! Join our online activists and commit to spreading the word about PH through social networking sites. http://groups.google.com/ group/PHAonlinemessengers PATHLIGHT fall 2011 Patient-to-Patient Support Line: 1-800-748-7274 27 ADVANCING THE CAUSE s u pp o r t g r o u p s Awareness Month is Just Weeks Away: But Time Remains for You and Your Support Group to Get Involved! W hen you hear the phrase “PH Awareness Month,” you may immediately think of large campaigns to raise PH awareness both nationally and internationally every November, but that's not always the case. Awareness month activities can be grand and national or international in scale, but they can also be local, homegrown and easy to organize. Rest assured, even though we are only a few short weeks away from Awareness Month 2011, there are many things you can do to make an impact, especially when you link up with others to make your project happen. Work with your support group PHA’s network of support groups is the ideal place to start if you have a great idea about ways to educate those in your community about PH. In the past year, many support groups have worked together on awareness projects. Many awareness efforts require minimal preparation, but can still be very effective. Creative support group leaders and members consistently come up with ideas that pack a punch and can be carried out quickly. In 2010, the Kentuckiana Support Group, which serves those living in and around Louisville, Ky., decided to educate people living in the region by setting up informational displays around the city. In preparation for Awareness Month, the leaders of this group hosted a craft night where members helped assemble and decorate the displays that would be placed around the city. Not only was this meeting productive, but as the group glued and decorated boards, the casual atmosphere allowed them to have fun conversations and get to know one another. You don’t even need to create a new event or display to get the word out about PH; if you keep your eyes open, you might be able to find community Joan Stevenson, leader of the Lehigh Poconos Support Group in Pennsylvania, educates people at a local community center about PH. events that are already taking place and would be ideal for your awareness efforts. For example, every year the Omaha and Western Iowa Support Group participates in the University of Nebraska, Omaha Health Fair, sending volunteers to represent the group with a pulmonary hypertension education booth. Do something during November or after! The key to awareness raising is getting the word out. If you can’t put together a large awareness campaign this fall, think about doing something small. Even when your PH keeps you at home and steals your energy, you can still reach out to others through Facebook, email, letters or the phone. November is the perfect time to spread the word about PH, but you can also spread awareness all year through. Give it a try! w By Sophie Klein PHA Volunteer Services Associate Dedra Richardson, sister of PH patient Kim Ford, shows how easy it is to do a small awareness project. She set up this informational candy basket on her desk at work. For 25 cents, co-workers got a piece of candy and some information about PH. For more ways to get involved this November, visit www.PHAssociation.org/AwarenessMonth2011 28 www.PHAssociation.org PATHLIGHT FALL 2011 S u pp o r t g r o u p s N o doubt about it. Many patients are living a long time led the group in making a float for a local parade and with pulmonary hypertension and, while previously has invited children and grandchildren to the meetings. active in their local support group, may find their For more ideas on adding a youthful perspective to your need to participate wanes. Others may have a change in meetings, read the story on p.6. their PH status through transplant or Post PH? other surgery. If this describes you, we want you to know that there’s a place Whether the result of pulmonary Your presence can for you at the table — whether it’s to thromboendarterectomy (PTE) surgery, be a huge comfort to get help for yourself or to help others. transplant, or eventually diagnosis with patients who are just a different condition, some people may I’m not newly diagnosed. Are support coming to understand no longer have PH health concerns to groups for me? draw them to meetings. But they still can their diagnosis ... It’s no surprise that many people contribute much to local support group flock to support groups when they activity. Anyone who has experienced PH first find out they have PH. Over time, can relate to those living with PH. These a patient may acclimate to the disease and, ultimately, patients bring hope to others by sharing their stories. learn to live with a “new normal.” At this point, many This was the case for the Newport Beach Support patients stop attending meetings for support. But your Group in California when one of the group’s members, presence can be a huge comfort to patients who are just Monica Sifuentes, a post-transplant patient, spoke to coming to understand their diagnosis, and you might be the group this past year. Members were thrilled to listen just the one to motivate and inspire those who need your to the story of how her life had changed since her lung support at a fragile time. transplant. They also had many questions for her about her path to transplant. Enliven your group with a youthful perspective. “ ADVANCING THE CAUSE There's Always a Place for You at the Table ” It’s easy to find the under-40 crowd online, keeping in touch with friends though email, Facebook and Twitter, but there aren’t usually many younger patients at support group meetings. A number of support group leaders buck this trend by creating activities for the young and young at heart. Mid-Hudson Valley, N.Y., support group leader Kiara Tatum, a member of PHA's Generation Hope, an email group for patients in their 20s and 30s, was encouraged by her doctor to attend a support group. Now she not only attends a group, but leads it. This year she For more information about support groups and getting involved, contact Debbie, PHA's Director of Volunteer Services, at [email protected] or 301-565-3004 x755 or visit www.PHAssociation.org/ LocalSupportGroups w By Sophie Klein PHA Volunteer Services Associate Welcome, Chanda Causer, Patient Outreach and Services Manager! As the Patient Outreach and Services Manager, Chanda works with members of the PH community to expand programming among special populations of PH patients and caregivers. She builds pathways between these populations and PHA to help identify and prioritize the interests of these groups, and creates resources and services to meet identified needs. Chanda can be reached by phone at 301-565-3004 x777 or email [email protected] or. Chanda's predecessor in this position, Emma Bonanomi, has transitioned into the role of Health Education Specialist where she writes and edits PH education materials and develops psychosocial resources for patients and caregivers. PATHLIGHT fall 2011 Patient-to-Patient Support Line: 1-800-748-7274 29 ADVANCING THE CAUSE s u pp o r t g r o u p s The PHA Support Group "Scoop" W ith more than 235 support groups nationwide, we've got some great stories from their meetings to share. Read on to find out what's going on across the country! • “What is… a right heart catheterization for $500, Alex?” Ever think you would hear those words during a PH support group meeting? PH support groups across the nation are starting to play games at meetings, including “PH Jeopardy!” South Riverside County Support Group Leader, Alex Flipse, brought the idea to her group and shared it with other leaders; now Dallas and other groups — including Treasure Valley (Idaho) and Hawaii — are testing out their patients’ knowledge on PH trivia and educating members in the process. • Feeling crafty? The southern Colorado group “Colorado Springs Wheezers” organized “Crafts for the Cause,” a meeting with an opportunity for creative hands and minds to create crafts to uplift, raise awareness and educate. • The Hawaii PH Support Group worked with a very talented local artist to create special postcards (pictured above) from the group to send in sympathy and support of Japanese earthquake and tsunami victims. The group members signed the cards, and the cards will be hand-delivered or placed on a collage board at several different Tsunami Evacuation Shelters in Japan. • Food. We love it, you love it, but what does a hearthealthy diet consist of? Did you know that spinach might be good for most, but not necessarily for a PH patient? Step away from the greens, Popeye! PH support groups in York, Penn., and Newark, N.J., hosted special cooking health classes in local kitchens. The Albany, N.Y., and Kentuckiana groups hosted meetings on nutrition and diet, too. In LehighPoconos, Penn., and Twin Cities, Minn., patients came together to for special summer picnics and potlucks. Support groups in the Dallas area hosted their 8th Annual North Texas Picnic. • Downward-facing what? PH support group leaders are stretching more than just their imaginations at support group meetings. The support group at Penn Presbyterian in Philadelphia brought a certified yoga 30 A postcard from the Hawaii PH Support Group to Tsunami Evacuation Shelters in Japan. The card reads, "Stay Strong and Don't Give Up — Aloha from Hawaii." instructor to their meeting and the Long Island group introduced the benefits of ki yoga to their members. • You want me to pay HOW MUCH? PH support groups are helping to share untapped resources and unlock the mystery of insurance support by hosting meetings on the cost of medicine and insurance matters. Groups in Inland Empire, Calif., Greater Kansas City and Everett, Wash., all brought insurance to the forefront of their meetings. • Oh, the teenage years! One of our oldest groups, the Milwaukee PH Support Group, marked its 14th year with a celebration at a restaurant for their members. • Some hesitate to attend support groups out of fear that they will be downbeat. Many groups deal with the fact that yes, PH can be depressing, but they respond with inspirational speakers and social workers who can help members fight back against depression with real tips and tools for making the best of this disease. Groups in Charleston, W.Va., Milwaukee, Wisc., and New Orleans, La., hosted meetings on coping, emotions and depression. Support groups in the Eastern Panhandle of West Virginia, Carbondale, Ill., and northern New Jersey brought speakers to talk about the psychological aspects of PH and how to beat back the blues. The Lilac City Spokane PH group in Washington state had a meeting on a “Day in the Life of a PH Patient.” • This Lilac City group also hosted a meeting focused www.PHAssociation.org PATHLIGHT FALL 2011 Story continued on next page s u pp o r t g r o u p s Story continued from previous page • Don’t touch that pump! PH support groups in Gettysburg, Penn., and Sarasota, Fla., focused on emergency situations for PH patients. Better to be prepared, we always say. The upstate South Carolina group hosted a meeting on radon chemical testing in your home. • Support groups get political! PH patients don’t need to live in D.C. to get involved in advocacy. If you came to any one of these support group meetings, you would have had Washington, D.C., come to you: PHA Welcomes New Support Line Volunteers E very week, the PHA Patient-to-Patient Support Line switches to a different volunteer, the majority of whom are long-term patient survivors. We also have a parent of a teenage patient waiting to answer your calls! We eagerly welcome three new volunteers to our support line team: Marcia Beverly, Stuart Berwick and Melanie Kozak. These three are all support group leaders, have been involved in past PHA International PH Conferences and work closely with PHA staff members on a variety of campaigns. In other words, they are very experienced in the community and are a good resource for support. Call our Patient-to-Patient Support Line at 1-800748-7274 and chat with them or any of our attentive, trained and understanding volunteers. We are always looking for future Support Line Volunteers! Contact Debbie Castro for more information and to apply: [email protected] or 301-5653004 x 755. w »» The Fresno Support Group in California hosted the staff aide for local Congressman Devin Nunes at its August meeting. They educated him on the Tom Lantos PH Research and Education Act. »» Diane Ramirez, the advocacy chair for her support group in South Carolina, traveled to Asheville, Greensboro, Piedmont and now Lexington to give talks on “Making Your Voice Heard” in the political process. w ADVANCING THE CAUSE on laughter and asked each member to bring a joke to share. The Los Angeles area support group meeting at Kaiser Hospital brought comedian Greg Reid to share some chuckles with the group. By Debbie Castro PHA Director of Volunteer Services "A Breath of Fresh Air" continued from page 6 • Field trips to the aquarium, museum, movies, zoo or park • Happy hour or karaoke • PH Jeopardy or game night (card tournaments, casino parties, etc.) • Raising awareness about PH at health fairs and schools • Road trips and seasonal activities (caroling, pumpkin picking, trips to the farmers market, etc.) • Mommy and me/daddy and me activities • Bowling, pool tournaments, video game challenges • Birthday and diagnosis anniversary parties • Concerts and sporting events • Monitored exercise group/chair yoga/therapeutic recreation activities • Cooking classes • Mentoring or volunteering in the community • Luncheons, BBQs, picnics and potlucks • Photography, music and other shared interests Find more great ideas from Lindsay at www.PHAssociation.org/YoungAdults/SupportGroups. Generation Hope is an email group for PH patients in their late teens, 20s and 30s. w By Lindsay Collins, PH Patient & Support Group Leader Marcia Beverly Stuart Berwick Melanie Kozak PATHLIGHT fall 2011 Patient-to-Patient Support Line: 1-800-748-7274 31 ADVANCING THE CAUSE special events Coast to Coast: Veteran Event Planners Make November Event-ful D uring PH Awareness Month, PH community members do their best to spread the word about PH. For certain veteran event planners, these efforts take shape in their Awareness Month Special Event. Throughout the month of November, Special Events will be held all across the U.S. to raise PH awareness and funds for research and programming. On Saturday, Nov. 5, crowds will gather in Baltimore, Md., for the 3rd Annual Pulmonary Pints: Pubcrawl for PH. The very next day, on the other side of the country, runners will take to the streets of Stanford, Calif., during the 11th Annual Race Against PH. On Nov. 12, Sheila Williams and Diane Dauwalder will rise before the sun to set up and arrange the 5th Annual North Texas Walk. At the same time, 692 miles away, Cindy Klein and Carol Lindstrom will be up early, prepping for the 6th Annual PHenomonal Hope for a Cure Brunch in Omaha, Neb. Later that day, residents in St. Louis will embark on a culinary journey at The Greater St. Louis Area PHA Dinner & Wine Tasting Fundraiser. This November will also bring people to Pompano Beach, Fla., for the 4th Annual South Florida PH Fun Walk, and hundreds will gather on Long Island to cap off the Awareness Month momentum and the 2011 Special Events calendar at the 7th Annual New York Funwalk. These hallmark events have set the framework for PH Awareness Month Special Events by creating a nationwide impact from the local level. Integral to each of these events is the opportunity to raise awareness and greater public understanding of PH. Through guest speakers, information tables and handouts, event participants learn more about PH and its impact on patients and families. Amanda McKee, who coordinates the St. Louis Dinner & Wine Tasting with her support group, stresses the importance of the educational aspect of events: “People need to know why they are donating. When they have a better understanding of PH, they feel more connected to the cause.” With the help of these veteran event planners, people all across the U.S. will be celebrating PH Awareness Month by walking, running, sipping, tasting or dancing for a cure! Make your plans to attend an event this November by visiting PHA’s online events calendar: www.PHAssociation.org/Calendar w PHenomenal Hope for a Cure Brunch, Omaha, Neb. New York Fun Walk PHA Dinner & Wine Tasting, St. Louis, Mo. Pulmonary Pints: Pubcrawl for PH, Baltimore, Md. Race Against PH, Stanford, Calif. North Texas Walk 32 www.PHAssociation.org PATHLIGHT FALL 2011 South Florida PH Fun Walk special events Raising Funds for PH Research: "Wojo" Style! about the amazing PH journeys of many other “PHers” local to the area. During this year’s event, I also had the pleasure of being able to recognize Betty Lou's accomplishments, a moment I want to share with all of you: Betty Lou, it is not enough to simply thank you for spearheading this successful event. I want to also thank you for giving those of us who have lost a loved one to this disease the proof that something meaningful can come from something so tragic. … Thank you for allowing us to know Matthew, Michael and Jerry by telling their stories. … Thank you for raising more than a hundred thousand dollars over the past several years to push PH science forward. And, thank you for being an amazing role model and friend. ADVANCING THE CAUSE T hose of us who have been affected by PH understand the emptiness this disease can cause. In these lifealtering moments, we have been faced with the challenge of continuing to live life with meaning. Few of us, however, are able to do this with the energy, grace, and exuberant love that Betty Lou Wojciechowski (“Wojo”) and her family have exhibited — this is “Wojo” Style! On June 27, 2011, I had the opportunity to gather with 180 friends of the Wojo family for the 4th Annual Swing 4 the Cure Wojo Golf Classic at Tustin Ranch Golf Club in Southern California. This event is a labor of love to honor the memory of Betty Lou’s two sons, Matthew and Michael, and her husband Jerry Wojciechowski by raising funds to support pulmonary hypertension research. In addition to participating in a fun event complete with 18 holes of golf, a helicopter ball drop, a silent auction, and a live auction by an auctioneer who could talk at lightening speed without ever pausing (really!), this year’s event featured live entertainment by Diamond Tom (a compliment to Neil Diamond), who survived a PH-caused double-lung transplant. We also learned more For more information about the Swing 4 the Cure Wojo Golf Classic, log on to www.swing4thecure.us. And, think about joining us next year for what is sure to be another fun, memorable and inspirational event! w By Laura D'Anna Chair, PHA Board of Trustees Find PHA Special Events on YouTube! O ur Special Events community is comprised of dedicated volunteers who devote their time and talent to organize, host and run phenomenal fundraisers. All of these volunteers have personal connections to pulmonary hypertension and the Pulmonary Hypertension Association — connections that drive them to make a difference in fighting this disease. Now you can watch video testimony of these Special Events organizers and event attendees on PHA’s YouTube channel! There is also event footage to give you a look at the day-of excitement that makes these events truly special. Browse these videos by visiting www.youtube.com/phassociation, and navigate to the “PH Special Events” playlist. Our Fall 2011 featured videos come from the participants and organizers of the Race Against PH in North Carolina. This June 25 inaugural event was the talk of the town with hundreds attending to learn more about pulmonary hypertension, participate in a PH-friendly six-minute walk, and build community. These videos capture the journeys and stories of those affected by the illness. The walk raised more than $17,000 to directly support PHA’s mission and programs. We now have a FlipCam loan program for your special event! If you are a Special Events organizer and are interested in recording video footage of your upcoming event, contact [email protected] or call 301-565-3004 x765. w PATHLIGHT fall 2011 Patient-to-Patient Support Line: 1-800-748-7274 33 ADVANCING THE CAUSE special events 34 Inaugur a l Ev e n t s M ak e a Sum m er Spl as h ! J une 2011 saw the most special events ever in the history of PHA’s special events program with 10 fundraisers! Many of these events were held for the very first time. Walks, golf, an arts festival and a bunco tournament all made the season’s roster. Thanks to our inaugural event planners for hosting fun, creative and successful fundraisers to kick off those dog days of summer in style. w Event: James A. Martin Memorial Walk for PH Event: Miles for Mallory PHamily PHun Walk Location: Southern California Location: Minneapolis, Minn. Attendance: Approximately 100 participants Attendance: Approximately 90 participants Pictured Above: Walkers pass under a balloon arch and Pictured Above: Each registered walker received a “JAM for PHA” — the walk’s chosen theme. specially designed event T-shirt. Amount raised for PHA: More than $13,000 Amount raised for PHA: More than $9,000 Event: Race Against PH — North Carolina Event: Rolling PHor a Cure Bunco Tournament Location: Research Triangle Park, N.C. Location: Ormond Beach, Fla. Attendance: More than 350 participants Attendance: 25 participants Pictured Above: Participants race toward the 5K finish Pictured Above: At this casual event, the first of its kind to line. Race Against PH — North Carolina also featured a benefit PHA, participants play bunco, a popular luck-based community-friendly “Six-Minute Walk” option. dice game. Amount raised for PHA: More than $17,000 Amount raised for PHA: More than $3,000 www.PHAssociation.org PATHLIGHT FALL 2011 PHA upcoming events ! Sat., Oct. 29, 2011 Run for Lungs WHERE: Jackson, Miss. DETAILS: Tonya Moss at [email protected] or 601914-9503 or www.firstgiving.com/ PHAssociation/RunforLungs Sat., Nov. 5, 2011 3rd Annual Pulmonary Pints: Pubcrawl for PH WHERE: Baltimore, Md. DETAILS: Katy Hayes at keboehk@ hotmail.com; Ashley Boehk at [email protected] or 703607-4360 Sat., Nov. 5, 2011 “Sarah Smiles” Inaugural Funwalk for PH WHERE: Camillus, N.Y. DETAILS: Michelle Peek at mpeek@ twcny.rr.com or 315-672-5690 Sat., Nov. 5, 2011 Dining for PH 2011 WHERE: New York, N.Y. DETAILS: Edith Morales at 212-9420017 or [email protected] Sun., Nov. 6, 2011 2nd Annual Abby’s Road PHun Walk WHERE: Albuquerque, N.M. DETAILS: Jen Anderson at [email protected] Sun., Nov. 6, 2011 11th Annual Race Against PH WHERE: Stanford, Calif. DETAILS: www.raceagainstph.org or Kristy Kerivan at [email protected] Sat., Nov. 12, 2011 4th Annual South Florida PH Funwalk WHERE: Pompano Beach, Fla. DETAILS: Pat Hellyer at 561-737- 8000 or [email protected] Sat., Nov. 12, 2011 2nd Biennial Greater St. Louis Area PHA Dinner and Wine Tasting WHERE: St. Louis, Mo. DETAILS: Amanda McKee at mharv78@ hotmail.com or www.firstgiving.com/ PHAssociation/GreaterStLouisDinner Sat., Nov. 12, 2011 5th Annual North Texas Fun Walk WHERE: Grand Prairie, Texas DETAILS: Diane Dauwalder at [email protected] or www.firstgiving.com/PHAssociation/ TexasFunWalk Sat., Nov. 12, 2011 6th Annual PHenomenal Hope for a Cure Brunch WHERE: Omaha, Neb. DETAILS: Cindy Klein at cklein1058@ aol.com or Carol Lindstrom at [email protected] Sat., Nov. 19, 2011 2nd Annual Unmask PH: A Masquerade Ball WHERE: Wilkes-Barre, Penn. DETAILS: Lisa Granahan at [email protected] Sat., Dec. 10, 2011 7th Annual NY Funwalk for PH WHERE: Long Island, N.Y. DETAILS: Joanne Schmidt at [email protected] or 631-427-4586 or Mary Bartlett at [email protected] December 2011 Look for the winter issue of our Event-ful Times e-newletter! SIGN UP: Leslie Mahaney at [email protected] Sat., Nov. 12, 2011 Vision of Hope PH Gala WHERE: Hunt Valley (Balt.), Md. DETAILS: Nicole Cooper at schlease@ hotmail.com or 443-677-3729 or www.firstgiving.com/PHAssociation/ VisionofHope December 2011 Start making plans to host a spring event fundraiser in YOUR community! DETAILS: Jessica McKearin at [email protected] or Leslie Mahaney at Eventful@ PHAssociation.org Sat., Nov. 12, 2011 Orlando PH Chili Cook-off & Bake Sale WHERE: Orlando, Fla. DETAILS: Tina Waldman at tina1dev@ yahoo.com or 407-914-9748 or www.firstgiving.com/PHAssociation/ orlando-chili December 2011 Special Events training webinar — learn more about PHA’s special events program! DETAILS: Jessica McKearin at [email protected] or Leslie Mahaney at Eventful@ PHAssociation.org For more special events coverage visit To view a complete, up-to-date listing visit www.PHAssociation.org/SpecialEvents www.PHAssociation.org/Events PATHLIGHT fall 2011 ADVANCING THE CAUSE Fri., Oct. 28, 2011 A Cure for Five Pennies WHERE: Schaumburg, Ill. DETAILS: Denise DeGuzman at [email protected] or 847-697-2934 or www.firstgiving.com/ phassociation/4th-annual-cure-forfive-pennies-gala Patient-to-Patient Support Line: 1-800-748-7274 35 ADVANCING THE CAUSE Thank you, Interns! PHA extends a huge thank you to our summer 2011 interns, whose amazing contributions have made a real impact on the programs and services PHA is able to provide. w Danielle Doubt, Advocacy & Awareness Intern As the summer intern for PHA’s Advocacy and Awareness department, Danielle focused on raising awareness of the disease and supporting the PH community in advocating for the Tom Lantos PH Research and Education Act of 2011. Danielle organized and promoted the webinar, “Lobby Locally: Fighting PH through District Visits” and worked with the Advocacy and Awareness team to collect and deliver letters to Members of Congress requesting cosponsorship of the PH bill. She also assisted with preparations for the PH Professional Network Advocacy Day in September Danielle returns this fall for her senior year at St. Mary’s College in Maryland where she will complete an English major and Women’s Studies minor. Emma Powers, Patient Outreach & Services Intern Throughout her internship, Emma sought to improve patients’ ability to receive information and support immediately after diagnosis. She managed Envelope of Hope requests, assisted in the design of new patient materials, and developed resources to help PHA’s staff better understand each population’s needs and concerns. Emma also completed a thorough indexing of Our Journeys, the section on PHA’s website where patients and caregivers share their stories, and helped with a detailed overhaul of the section’s navigation. For the last two years, Emma studied creative writing at the University of North Carolina at Wilmington, and she plans to study psychology at the University of Virginia this fall. Glenda Lopez, Medical Services Intern During her internship, Glenda helped with several English-Spanish translations in PHA Online University and PHA Classroom and assisted in editing the monthly PH Research Roundup e-newsletter for PH Clinicians and Researchers and PH Professional Network. Additionally, she assisted in mailing welcome packets, letters, copies of Pulmonary Hypertension: A Patient's Survival Guide and current issues of Advances in Pulmonary Hypertension to PHA’s medical community. “My favorite part of this internship was discovering that there is a vast and diverse community of PH professionals committed to understanding and treating this disease,” says Glenda. This fall, Glenda will finish her B.A. in Biology at Grinnell College in Iowa. Experiential Learning Opportunities at PHA! A re you — or someone you know — looking to enhance your academic experience beyond classroom walls for the spring semester or summer? PHA offers a variety of internships year-round. From Web Development to Volunteer Services to Special Events and more, there is something to meet your educational and professional goals. To learn more about our internship program and see which internships are currently available, visit www.PHAssociation.org/Internships or contact Haley at [email protected]. Be part of the team that is changing the future of this disease: apply for a PHA internship. 36 www.PHAssociation.org PATHLIGHT FALL 2011 Persistent Voices Edi to r’ s Co rne r Hello, PH Community, and welcome to a special edition of Persistent Voices! We all have a toolbox that we draw from to help us cope with this journey called pulmonary hypertension. Using a creative outlet can be a powerful way to help us deal with the ups and downs of our everyday life with illness. Some people sculpt; some people paint. Some folks use a favorite craft or hobby to relieve stress (I make cards to help me relax). Studies have shown that writing as an outlet can ease symptoms, boost the immune system and improve emotional and physical health. In the lines below and on the following pages, you'll find five PH patients (Jode, Carol, Mack, Yunena and Susan) who use creative writing to express their feelings and share their experiences. After reading their poignant poetry, I may give it a try myself. I'm always looking for a new tool to add to my "Coping with PH" toolbox. Why not consider giving it a try too? Today, here's to expression and its benefits! Joanne Sperando-Schmidt, Persistent Voices Editor A Poem by Carol Lindstrom, Bellevue, Neb. C arol, a PH patient and former Nebraska/W. Iowa Support Group Leader for five years, wrote this poem to represent PHA in a nonprofit poetry contest. The goal of the contest was to celebrate a non-profit of your choice with an original poem (four to eight lines long) that highlights the organization's mission. Here's how Carol celebrated PHA. w The Heart and Soul of PHA An organization that cares is the one that stands out One who is active and gets out and about. A cure for pulmonary hypertension is PHA’s goal To prevent it from damaging the core of our soul. They support, advocate, educate and make people aware Of this dreadful disease because they do care. And because of this mission to which they adhere The prevention and a cure is definitely near! PATHLIGHT fall 2011 Carol Lindstrom Patient-to-Patient Support Line: 1-800-748-7274 37 Persistent Voices A Poem by Jode Cox, Auburn, Wash. J ode wrote this poem in 2009, the year she was diagnosed with PH. w This Hill The road keeps getting longer The farther that I walk A headwind seems to push me back I don’t have the breath to talk Each day I am able to do less No matter how hard I try For now I can only do my best You don’t even understand why My lungs they burn, my heart it pounds My throat is getting dry I see a looming hill ahead And now I want to cry I used to run and jump and play Nothing too hard to do Now the smallest task I take I must ask for help from you To you this hill may seem small To me it is a mountain I don’t want to ask for help I keep going as fast as I can You think I don’t see the resentment The bitterness in your face You think I choose to be sick To give up my life in this place I slow with every footstep Until I have to stop I find a way to busy myself To pretend there is nothing wrong This hill is not enormous The one you gave to me I will make it to the top I will do it just for me To admit this trouble to you Is to admit it to myself I don’t want to ask of others I want to do this by myself I feel this is all my fault If only I could heal The shame I feel at every gasp This journey has become too real If only I was stronger This disease I could have fought It silently crept up to me The illness I don’t want 38 www.PHAssociation.org Jode Cox PERSISTENT VOICES FALL 2011 Persistent Voices A Poem by Yunena Morales, Brurien, Wash. Y unena is the leader for the Seattle/Des Moines Support Group. w Lady PHTN I took a walk at early dawn years ago. I woke up full of glee, anticipation and dreams of greater achievements. The rays of sunshine met me at every turn. I held my father and mother’s hands and flitted away like a sun bright yellow butterfly. It was exciting with hope at every turn. I met a lady. I smiled and glided down the road. She chased after me, a beaming smile. She said, Young lady, I am taking you on a most intrepid trip you could ever dream of. My name is pulmonary hypertension. My first name is Idiopathic. They call me IPAH for short. You will be introduced to some doctors who will confuse you. You cannot imagine, little one, Life will never be the same again. Off balance, you will almost fall dead, Yunena Morales Caused by those to make you whole. Twelve inconclusive diagnoses and more to come. All an impact to put you on a dance spin 360 degrees. A turn by all these confused beings that will stir every emotion one can evoke in the universe. God stepped in just as I was about to go out of control in anger. He said, my child, there is a reason. Choose to celebrate every moment; Do not die before you are dead. Life is much more than health. The world needs a heart like yours to advocate for those who are so judged, So underestimated and belittled by a system which is crammed with the proud and the haughty. Here lies the path; I said I am ready. Go for it, Lady, He said. PERSISTENT VOICES FALL 2011 Patient-to-Patient Support Line: 1-800-748-7274 39 Persistent Voices A Piece by Mack McCarthy, El Mirage, Ariz. M ack wrote this description in the spring of 2011 to explain what PH does to him every day. After first sharing it on Facebook, his friends encouraged him to share it with the wider PH community. w As I lie upon my pillow at peace like a baby lamb in no pain, my PH lies in wait like a tigress waits for her prey. I stir; she twitches in anticipation. I wake; she strikes like a bolt of lightning and thunder at the same time. She tears at my lungs like nails down a chalkboard and roars out at me to say I am still here; you cannot escape my wrath. I stand and cringe; then, when done with my bathroom visit, I weigh myself and she slaps me so that I am dizzy and nearly fall. I slowly go to the kitchen table as she takes my morning breath away. I sit, and with her still tearing at my lungs, I am nauseous from the pain. I eat to calm my stomach. I take my morning medication, and she slowly releases her death grip on me as the medication takes effect. I pray I can make it through another day. She stays with me throughout the day like a cat playing with a mouse. The day is ended, it is time to rest. I take my sleeping pill and fall into a restful sleep as she waits, grumbling in her throat like a purring kitten waiting for another day. A Personal Story and Poem by Susan Gould, Christmas, Fla. W hen a doctor gives you a diagnosis of an incurable disease, your life seems to stop at that point, not knowing where to turn for help, guidance and someone to listen to you. You think you are the only one and then you find out you are not. I knew I had a long battle ahead of me, but I was willing to do anything to make it better. I asked my doctor if he could get me into pulmonary rehab. Now mind you, I thought this would be really easy, but it wasn’t. Doctors’ offices get so busy and sometimes they forget you. Well, I kept pushing and pushing (but nicely) and finally got it. Rehab turned out to be a little harder than I thought. Around the beginning of June, they asked me if I had some long-term goals for the therapy. Well, you know how you get these questions and think, “Hmmm, go ask the next person.” But I didn’t say that. I told them that I wanted to climb the side of a mountain to spread some of my brother’s ashes there. He always got a kick out of me talking to him about mountains while he was sick, and when he passed, I thought about him and about doing this. The ladies at pulmonary rehab were awesome. They worked with me and gently Story continued on next page 40 www.PHAssociation.org PERSISTENT VOICES FALL 2011 Mack and his wife Mary Persistent Voices Story continued from previous page pushed me along. Well, I want to tell you that last October, I climbed the side of that mountain, took my brother’s ashes and spread them around a glen where we stopped to rest. Truthfully, I was crying when I did it. Then we climbed a little higher to the top, and I yelled out, “Thank you, pulmonary rehab.” I know it wasn’t just the rehab, but it was me too. I worked very hard to get this done. On another trip, I was able to make the trek to see a beautiful waterfall. It was a long climb, but I did it. People on the way up were telling me that I was their hero. My hero was next to me, carrying my oxygen tank up the steps as we went. w A Poem by Susan Gould They tell you there's no cure. It's all spelled out for you but the world now goes silent as those words are said to you. Pulmonary hypertension is the name of the game; high blood pressure in the lungs ... are they really insane? Where did it come from? Why is it here? I guess I really now have something to fear. I'm scared, I'm lost, I don't know what to do. I cry, I scream, I think now I'm through. But the sound comes back on; the head now thinks straight as you search for knowledge to not seal your fate. It's surprising to know how many people like you have this terrible disease and don't know what to do. But knowledge is power and the name of the game is to find out all you can, so you can remain in charge of your life, your fate rests with you. There are doctors, support groups and friends who have come in to your life, and there they will stay; forever in your heart for now and always. PERSISTENT VOICES FALL 2011 Susan Gould Your story is going to touch the heart of someone who reads it, so don’t think it isn’t worth telling. ~ Jerry Wojciechowski The purpose of Persistent Voices is to allow patients and their families and friends to share their personal experiences and coping strategies with one another. It is not to provide medical advice on personal health matters, which should be obtained directly from a physician. Persistent Voices, Pathlight and PHA assume no responsibility for readers’ actions taken as a result of their interpretation of information contained in the publication. Please submit your stories, with contact information and appropriate photograph, to: Megan Mallory, “Persistent Voices,” Pulmonary Hypertension Association, 801 Roeder Rd., Suite 1000, Silver Spring, MD 20910, or as an attachment (.pdf, .doc, .docx or .rtf) to [email protected]. (Submissions may be edited for length and clarity.) Patient-to-Patient Support Line: 1-800-748-7274 41 community classroom Twice as Nice: Meet the Conference Theme Contest Co-Winners T his summer, the International PH Conference and Scientific Sessions Planning Committee turned to the PH community once again to help generate a theme for PHA's 10th International PH Conference. As a special anniversary Conference, many ideas reflected PHA’s roots in Florida with the historic meeting of PHA’s founders around a kitchen table in 1990. With more than 50 theme ideas submitted, one theme idea stood out … TWICE! Marilyn Mears, a PH patient diagnosed in 1997 from Canton, N.C., and Stephanie Layer, a PH patient diagnosed in 2000 from Maplewood, Minn., are our co-winners with the theme The Power of One: From a Kitchen Table to Around the World. Read on to learn about Marilyn and Stephanie and the Conference 2012 theme. How did you feel when you found out that you were a Conference theme contest co-winner? Marilyn: Since I rarely win anything, I was surprised and very pleased! Stephanie: When I got the phone call from PHA, I really couldn’t believe it. It took about an hour to sink in and then I called back to thank them again and say how excited I was about this. Why did you choose the theme you submitted? Marilyn: I was thinking about how PHA started with four women around the kitchen table and how far and wide we have grown over the years. Stephanie: Of course it is Florida where it all started — the four women sitting around a kitchen table. How could I not Marilyn Mears Stephanie Layer and her husband Thomas think of them? They are our heroes! They truly opened the door for hope and for a cure. What are you looking forward to most about Conference? Marilyn: Meeting new PHriends and learning about new therapies. Always holding out hope of learning of a cure for myself and others. Stephanie: Updated PH and treatment information to take back to our patients in Minnesota. I can’t wait to meet PH patients from around the world. Just being with everyone from the PH community, it gives us all hope to move forward. Both winners will receive a complimentary registration to PHA's 10th International PH Conference taking place June 2224, 2012 in Orlando, Fla. w By Suzanne Flood, PHA Marketing & Communications Manager Available Online: Recordings from Conference 2010 Plenary Sessions W ant a glimpse of what's in store for the 10th International PH Conference in 2012? Recordings of the general sessions from the 2010 International PH Conference are available on PHA's website. Experience highlights including the Climbing for a Cure: Opening and Keynote Address, Journeys Luncheon and more. You will see why you won’t want to miss this historic Conference in 2012! View recordings at www.PHAssociation.org/Conference/2010Recordings 42 www.PHAssociation.org PATHLIGHT FALL 2011 Save the Date! The Power of One: From a Kitchen Table to Around the World June 22-24, 2012 Renaissance Orlando at SeaWorld® Orlando, Fla. www.PHAssociation.org/Conference Registration opens January 2012! PHA’s International PH Conference is the largest gathering for pulmonary hypertension patients, family members and medical professionals in the world. Attendees have the unique opportunity to come together for three days of education and networking. COMMUNITY CLASSROOM PHA’s 10th International Pulmonary Hypertension Conference and Scientific Sessions Conference highlights include: • Networking opportunities including pre-Conference meet-ups, Support Group meetings • • • and an exciting Meet-and-Greet on Thursday evening! Education sessions led by leading medical professionals in the field as well as patients and caregivers living with PH day-to-day. Dedicated education sessions for medical professionals including a daylong Scientific Sessions and newly added CME Sessions throughout the three-day Conference. Opportunities to volunteer. Don’t forget to sign up for the Conference Early Alert Email list to stay up-to-date on the newest Conference developments! Sign up at www.PHAssociation.org/Conference Learn About PHA's Conference Scholarship Program T hrough the Conference Scholarship Program, PHA is committed to helping as many patients as possible achieve their goal of attending our International PH Conference in Orlando, Fla. Applications for patients in need will be made available online starting Nov. 15, 2011. Please visit www.PHAssociation.org/ Conference/Scholarships for more information. If you would like a Conference scholarship application mailed to you, please email [email protected] or call 301-565-3004 x764. In 2010, PHA provided 186 patients with more than $175,000 in scholarship awards. The number of patients we are able to help through the Conference Scholarship Program is entirely dependent upon the generosity of our donors. To make a donation to PHA’s Conference Scholarship Fund, please visit www.PHAssociation.org/ Donate/ConferenceScholarships or call 301-565-3004 x764. PATHLIGHT FALL 2011 Patient-to-Patient Support Line: 1-800-748-7274 43 COMMUNITY CLASSROOM medical professionals PH Professional Network Symposium: Furthering PH Education Thanks to Attendees and Speakers O n Sept. 22-24, PHA hosted the 2011 PH Professional Network Symposium Inspiring Hope: New Directions in PAH in Arlington, Va., bringing together close to 400 PH-treating allied health professionals for three days of education, networking and awareness-raising. Attendees came from all over the United States and as far as Vancouver, B.C., to attend the Symposium. PHA thanks all those who attended and participated in the 2011 PH Professional Network Symposium. More than 60 speakers, all medical professionals working in the pulmonary hypertension field, presented at nearly 30 different educational sessions throughout the Symposium. Educational session topics included “A New Dimension of Hope: Virtual Catheterization Lab,” “The Holistic Side of PH Management: Nutrition and Pulmonary Rehabilitation” and “Don’t Mess With My Meds: Smooth Transitions between Inpatient and Outpatient Care.” Without the speakers' participation and willingness to educate, the Symposium would not have been such a success! PHA also thanks Melisa Wilson, APRN, BC, who served as Symposium Chair, as well as the entire 2011 Symposium Planning Committee for their dedication and hard work in helping to make this Symposium possible. The Planning Committee consisted of 15 allied health professionals across various professions in all corners of the country, working together to plan sessions, choose speakers and guide the execution of Symposium. Look for a full recap of the 2011 PH Professional Network Symposium in the Winter issue of Pathlight. w PHA Thanks the Sponsors of the 2011 PH Professional Network Symposium Diamond Sponsors: Pfizer, Inc. — General support Actelion Pharmaceuticals US, Inc. — Gathering Knowledge, Fostering Hope: The REVEAL Registry (Saturday breakfast) • Team Hope: A Multidisciplinary Approach to PAH Care (Saturday luncheon) • Advocacy Day • Registration subsidy program • Registration brochure • T-shirts* • Room keys Gilead Sciences, Inc. — Inspiring Hope: One Medical Professional’s Climb to a Cure (Thursday dinner) • A New Dimension of Hope: Virtual Catheterization Lab (Friday luncheon) • “Who’s who?” contact book and name badge holder • Poster session and networking reception • Save-the-date postcards • Symposium recordings DVD • General support Silver Sponsor: Lung Rx — PH Professional Network committee meetups • Morning coffee breaks • Speaker ready room • Program book • T-shirts* • Notebook and pen • Daily Pulse newsletter* (Friday) Bronze Sponsors: Accredo Health Group, Inc. — Evaluation gift • Symposium flash drives • Welcome awareness materials* • Symposium giveaway Gold Sponsor: United Therapeutics Corporation — Hope in 2011: Top 10 Clinical Advances (Friday breakfast) • Audience response system • In-room wireless access • Continuing education credit • Welcome awareness materials* • Daily Pulse newsletter* (Thursday, Friday, Saturday) 44 General Sponsors: CVS Caremark — Daily Pulse newsletter* (Thursday, Friday, Saturday) CuraScript — Internet stations *co-sponsorships www.PHAssociation.org PATHLIGHT FALL 2011 PHA on the Road: Three Years of PHenomenal Education! “I would advise anyone with PH to take part in group sessions, therapy and PHA on the Road when available to you. It can make a difference. I know it did for me,” says Yvonne Atkinson, a PH Patient from St. Louis, Mo. Since the first PHA on the Road forums in 2009, PHA has continuously been making changes to better suit the needs of our community. In response to feedback received in 2010, this year’s forums included more opportunities for networking. Each forum started with preforum support group sessions for patients, caregivers and loved ones, as well as parents of children with PH. In the past, pre-forum sessions were a mix of networking and educational sessions. The change this year gave attendees what they wanted — more time to network! “My favorite part of this conference is interacting with all of the people. From the doctors and nurses to PHA staff to meeting other people with the same disease I have. Thank you for a wonderful day!” says Lisa McConnaughhay, a PH Patient from Iuka, Ill. COMMUNITY CLASSROOM T his past June, PHA marked the third year of the PHA on the Road: PH Patients and Families Education Forums by visiting four new cities in three weekends. The 2011 PHA on the Road cities included Seattle, Wash. (June 4), Pittsburgh, Penn. (June 11), St. Louis, Mo. (June 11), and Minneapolis, Minn. (June 18). More than 800 patients and family members attended the 2011 forums, making this the third successful year in a row for PHA on the Road. General sessions for each forum covered topics including how PAH is diagnosed, long-term management and eating better. One new general session topic this year featured insurance issues and alternative means for getting treatment covered. Breakout sessions at the 2011 forums included topics on Emergency Situations, Pediatric PH – for Parents, Understanding Transplant Options, Exercise and Yoga, PH and Connective Tissue Disease, Traveling with PH and Women’s Issues. The St. Louis forum also hosted an additional breakout session called the Nuts and Bolts of Being a Research Subject. PHA also expanded family programming at the 2011 PHA on the Road forums. This year, the forums included both a support group networking session for parents of children with PH and an informational session led by a medical professional. PHA also continued to provide free child care and activities in the Kids’ Room the day of the forum for those children who accompanied their parents to PHA on the Road. “Thank you for making it possible for my daughter and I to attend PHA on the Road. This was our first opportunity to network, learn and meet other families,” says Gerilyn Viscek, a PH Caregiver from Edwardsville, Kans. PHA is looking forward to continuing the PHA on the Road forums next year and hopes to see you “on the road” in the future! Visit www.PHAssociation.org/ OnTheRoad for photo highlights from the 2011 forums. w Welcome, Kimberly Demirhan, Meetings Planning Associate! As a Meetings Planning Associate, Kimberly manages the logistics of the PH Professional Network Symposium and is also responsible for planning aspects of PHA’s International PH Conference, including the Scientific Sessions and the Research Room. She is responsible for assisting with the meeting coordination of the PH Professional Network Executive Committee, the Scientific Leadership Council and the Advances in Pulmonary Hypertension Editorial Board meetings that take place biannually. Kimberly also oversees the marketing and communications for the Building Medical Education in PH program. She can be reached at [email protected] or 301-565-3004 x763. PATHLIGHT FALL 2011 Patient-to-Patient Support Line: 1-800-748-7274 45 COMMUNITY CLASSROOM Final Daylong California PH Forum Paves Way for New Format C alifornia PH Forum 2011 PHA on the Road: PH Patients accomplished its goal of and Families Education Forums educating patients and in major cities across the the community about the United States. challenges of pulmonary “PHA has begun to hypertension. Held every offer educational programs in two years since 1999, this the years in between its big year’s event took place conferences, so we feel that June 25 at the Hotel Sofitel it is not as necessary as it in Redwood City, Calif., on once was to offer our regional the southwest shore of San alternative,” Judy says. L to R: Kelli Danner, Rita Orth, Judy Vucci and Jeannine Hart Francisco Bay. Kelli adds, “We will “It went well,” says Forum Committee member transition to doing luncheons with maybe one or two Kelli Danner. “We got really great feedback, they liked speakers. It’s easier on the patients, and with the the speakers we had, and we covered a lot of topics economy it’s easier because not as many people can connected with PH.” afford to travel.” With topics such “PH Basics,” “The Psychological Judy invites those not already on the California PH Impact of PH,” “Right Heart Failure,” “Research and New Forum mailing list to send their contact information to Therapy Options” and even “Yoga to Take with You,” the [email protected] if they would like to receive notice Forum appealed to a wide range of interests. of these future events. Presenters included healthcare professionals PHA thanks the members of the California PH from the University of California Los Angeles, Stanford Forum Committee and all those involved in making the University Medical Center and the California Pacific Forum a success over the past decade. We look forward Medical Center. to seeing the continuation of patient education through Kelli was one of four women to plan this full day of the new luncheon format. w PH education. The other committee members included By Edward Freundl, PH Patient and Volunteer Writer patients Rita Orth, Judy Vucci and Jeannine Hart. “One of our goals is to make sure people get the right information, that patients know about new medicines coming down the pipeline and the new choices they have,” Kelli says. According to Forum Committee member Judy Vucci, the Forum was originally set up to offer an informative educational and networking resource for PH patients in the years between the larger PHA International PH Conferences. With grant funding from pharmaceutical companies, they began in San Diego, but since 2001 have been hosting forums in the San Francisco Bay Area. Now refreshed and restocked! Note cards – 12 cards (four images, three each) Originally a three-day forum, this year's forum was Blank inside. One image carries a “Thank You” message on the outside. pared down to one full day. “Gradually our patients’ Featuring thethese same stories andprograms artwork Profits from cardsinspiring will support patient-serving at theas they Pulmonary Hypertension Association. committee decided our health issues required that did when first released, PHA’s CARD-iology cards are Each card was designed by an individual whose life has been touched by pulmonary hypertension. we step back to a smaller event with less preparation now available on distinctively-colored notecards with To order additional cards, or for more information about pulmonary needed, so Forum 2011 was a one-day format,” explains blank interior. your cards today for all your hypertension and Purchase PHA, visit our website at www.PHAssociation.org or call 301-565-3004. Our Patient-to-Patient Support Line can be Judy. special messages! reached at 1-800-748-7274. In coming years the California Forum will continue Visit www.PHAssociation.org/Store or to evolve as the Pulmonary Hypertension Association call 301-565-3004 to order. sponsors more events for PH patients, caregivers and card-iology_covercard_2011.indd 1 7/5/2011 2:13:57 PM physicians on the West Coast and nationwide, such as CARD-iology thank you 46 www.PHAssociation.org PATHLIGHT FALL 2011 Building Medical Education in PH medical professionals A Partnership Initiative to Advance Medical Understanding of Pulmonary H y p e r t e n s i o n 3rd Annual UNC-Duke Research Triangle Pulmonary Hypertension Symposium Sheraton Imperial Hotel Nov. 11, 2011 Durham, N.C. www.med.unc.edu/cme Pulmonary Hypertension: How to Recognize It, How to Treat It Lansing Community Center Nov. 15, 2011 Lansing, Kans. Call: Linda MowBray at 785-267-6003 9th Annual Update in Pulmonary Hypertension – Tufts University School of Medicine & Tufts Medical Center Hyatt Regency Cambridge Dec. 2, 2011 Cambridge, Mass. www.ganesco.com/conference2.php?id=9 B uilding Medical Education in PH events are designed to foster partnerships between PHA and PH Centers to promote continuing education in the field of pulmonary hypertension through CME/CEU educational events. The Building Medical Education in PH program is a benefit to members of PH Clinicians and Researchers and PH Professional Network. To partner with PHA in Building Medical Education in PH for your upcoming CME event, please contact Kimberly Demirhan at 301-5653004 x763 or [email protected]. Find Free Medical Education at PHA Online University PHA Online University (www.PHAOnlineUniv.org) is a cutting-edge source for free CME-accredited education and other resources about PH for medical professionals. It provides medical professionals from all disciplines the opportunity to learn about PH by taking courses authored by the foremost experts in the field. Highlighted Courses: Course: Diagnosis of Pulmonary Hypertension in Children Faculty: Dunbar Ivy, MD, University of Colorado School of Medicine, Denver, Colo. This course explores the clinical presentation and diagnostic evaluation of both neonates and children with PH and discusses the different uses of diagnostic testing in children with PH. Course: Physical Assessment of the PH Patient Faculty: Juliana Liu, MSN, ANP-C, Stanford University, Stanford, Calif. This course teaches the health professional to identify the physical signs related to PH as well as signs of some of PH’s associated diseases. It also discusses the physical signs of PH COMMUNITY CLASSROOM 8th Annual Pulmonary Hypertension Summit — Cleveland Clinic InterContinental Hotel and Bank of America Conference Center Nov. 6-8, 2011 Cleveland, Ohio www.ccfcme.org/pulhyper11 medical professionals Course: PH and Scleroderma from a Nursing Perspective Faculty: Barbara Smithson, MSN, RN, Rhode Island Hospital, Providence, R.I. Patients, This course on scleroderma discusses the different Tell Your levels of the disease as well as the function and Medical importance of various testing methods Professionals! Recent Webinars*: Title: The Role of the Respiratory Therapist in the Treatment of Pulmonary Hypertension Patients Faculty: Gerilynn Connors, BS, RRT, RCP, Inova Fairfax Hospital, Falls Church, Va. Title: Design and Validation of an Endothelial Progenitor Cell Capture Chip and Its Application in Patients with PAH Faculty: Georg Hansmann, MD, PhD, Children’s Hospital Boston/Harvard Medical School, Boston, Mass.; Shashi Murthy, PhD, Northeastern University, Boston, Mass. * Recordings of webinars can be found in the PHA Online University Library under “Abstracts and Presentations.” disease progression and the findings associated with treatment. PATHLIGHT FALL 2011 Patient-to-Patient Support Line: 1-800-748-7274 47 phenomenal youth Camille Frede, Youth Editor [email protected] interview with ph patient Jadyn Philipps Where do you live? I live in Naperville, Ill. Interview conducted by Isaac Kruger PHA Pathlight Volunteer How old are you? I’m 12 years old. My birthday is August 17. When were you diagnosed? I was diagnosed two and a half years ago. When did you first start having PH symptoms? I started having symptoms when I was in second grade. What were your symptoms? My main symptoms were fatigue, shortness of breath and passing out. What are your favorite activities to do? My favorite activities are horseback riding, crafts and softball. Have you ever felt unable to do something because of PH? Jadyn with her horse Fire Yes, I cannot always participate in P.E. or running activities. How has your life changed since you were diagnosed with PH? It hasn’t changed too much. I have to take pills four times a day and go to lots of doctor appointments now. What message would you like to pass on to other kids with PH? There have been some hard times, but I am doing really well! You just learn to live with the changes … and I am blessed! talk back! This is your space. Submit your jokes, cartoons, drawings, poems, questions, comments or ideas for future articles to PH Kids at www.PHAssociation.org/PHKids/Submit! For questions, you can reach Michal by phone at 301-565-3004 x800 or email at [email protected]. 48 www.PHAssociation.org PATHLIGHT FALL 2011 Talking with Your Teacher s About Your PH nurse, my teachers would always ask if I needed someone to walk with me, even if it wasn’t PH-related. I was so happy that they remembered our talk and were taking extra precautions. I think the meeting and talking to my teachers after class really helped. They got to hear what they needed to know about my health from an actual person instead of just breezing through the information in one of the many emails they get at the beginning of the year. I hope that speaking to my teachers showed them that I knew what I was talking about and that I was capable of handling things. Personally, I felt empowered talking to my teachers because I felt in charge of my PH and my situation at school. To all those who are struggling to get their needs across to teachers, I highly recommend having a meeting with your teachers when school starts. Don’t be intimidated about talking to your teachers after class because if they know about PH and what they should expect during the year, they will be able to help when a situation comes along. I hope this helps all those starting a new year of school and my best of luck! w phenomenal yo u th H i, I’m Danielle Epstein and I have idiopathic pulmonary hypertension. I was diagnosed in May 2005 and take calcium channel blockers. Having PH in school was at first very hard because my teachers didn’t understand my PH or how my PH might affect my school year. When I was in middle school, my guidance counselor would send my teachers an email explaining my PH and that I might not feel well and have to go to the nurse. I felt like many of my teachers never really read the email, and whenever something did happen that was PH-related, they didn’t handle it very well. When I got to high school, my parents and I decided to change that. We told my new guidance counselor that we wanted to meet with my teachers at the beginning of the year. Six out of eight teachers showed up to the meeting after school as well as my guidance counselor and my mom. My dad participated, too, by speakerphone. I explained PH to my teachers and told them that if I feel lightheaded or faint, I should go to the nurse and have someone accompany me. I also said that I might be out of school sometimes and that I would work with them to try to finish my schoolwork as soon as possible. A few teachers asked me questions and made some comments, but the whole meeting was probably only 15 minutes. Two of my teachers couldn’t attend, so I talked to them separately. Throughout the year, whenever I needed to go to the By Danielle Epstein, PH Patient Have tips of your own for coping with school and PH? Log on to PHA Teens and share! PHA Teens is a secure social network for teens age 13-18 who have PH: http://PHATeens.ning.com Can you find all eight differences between the two pictures to the right? Find more activities for kids at www.PHAssociation.org/PHKids Drawing by Nicole Northrop, PH Patient, age 16 PATHLIGHT FALL 2011 Patient-to-Patient Support Line: 1-800-748-7274 49 Family PHocus Nancy Frede, Parent Editor [email protected] When They Just Don't Understand... Talking About Your Child's PH with Your Significant Other D enial isn’t just a river in Egypt. It’s that the babysitter had never mentioned also something you run up against Lily turning blue. I pointed out that just when someone doesn't want to that day, the babysitter had said Lily was believe, or simply can't understand, turning ashy, and that “turning blue” didn't that a loved one is suffering from a lifemean she went Smurf-like. I was at the end threatening disease. of my rope with him. Whenever I tried to I got my first taste of denial when explain Lily’s condition in depth, he brushed my daughter Lily was diagnosed with it off. I even gave him the scary statistics. a ventricular septal defect and I was Nothing seemed to work. He recognized how told that she would need surgery. My important it was that she have her medicine boyfriend would not acknowledge how on time, but he didn't see why oxygen Dianna with her daughter Lily serious the situation was; he believed mattered so much. that if he didn't think about Lily’s upcoming surgery, then it I finally turned to the PH Family group on Facebook (a didn't exist. private Facebook group for members of the PH community), When Lily was in post-op after her surgery, my boyfriend and asked for suggestions. The group helped me find another asked me, "Was there a chance she couldn't make it?" When way to relay information about 24-hour oxygen. One night, I I replied yes, he said that he'd thought so, but hadn’t asked casually mentioned that I had read that when someone turns the question because he was afraid of the answer. I was blue, it means their oxygen levels are already really bad, and frustrated with him, but I thought that since Lily was going to I explained some of the other effects that can go along with be healthy after her surgery, I wouldn’t need to worry about turning blue. That got the message across! I didn't realize I’d his denial. But Lily's pressures in her heart didn't go down, made a breakthrough until the next day when he took Lily to and she was diagnosed with pulmonary hypertension. the store with him and put on her oxygen for the trip. I don't My boyfriend went to some of Lily’s doctor know if I wore him down with all the information, if he needed appointments. He would nod, agree, ask a few simple time to accept it, or if he really hadn’t understood that when questions, and when we got in the car, he would ask me to Lily is turning blue, she is already in real danger. From then explain what the doctor had said. He is very intelligent, but on, I saw steady improvement in his attention to making sure he felt like the doctors were speaking in a foreign language. I she was on oxygen. learned to use simple terms when relaying information about I'm still dealing with this problem of denial when I try Lily’s health to my boyfriend and other family members. to explain the severity of Lily's disease to other people. Even when my boyfriend understood Lily’s condition, he What I have discovered is that the same thing does not didn't “get it.” When Lily began having blue spells, her doctor work for every person. With some people, I need to describe prescribed 24-hour oxygen. My boyfriend would put her on pulmonary hypertension as scientifically as I am able to. For oxygen in the house, but refused to put her on oxygen when others, I have to give examples of how it affects her. Some they went out. He didn't seem to comprehend that 24-hour people don’t “get it” until I lose my temper. oxygen meant oxygen all the time. It was frustrating. My boyfriend and I still run into bumps whenever Lily’s I tried talking to him about keeping Lily on oxygen when doctors give us new information, and I still have to explain they went out, and he told me that he'd never noticed her things to him, but I'm glad we finally overcame this one turning blue. In the same breath, he also told me that he particular hurdle. It gives me more energy to concentrate on never looked for it. That blew my mind. He knew Lily had a all the other ones! w life-threatening disease that affected the heart and lungs, but By Dianna McGlone, Parent of a Child with PH he wasn't on the lookout for her to have blue spells? He said 50 www.PHAssociation.org PATHLIGHT FALL 2011 I have found a wonderful resource for to be brave and courageous and to parents of a child with PH. Extreme strive to overcome what seem like Parenting: Parenting Your Child with insurmountable difficulties." This is a a Chronic Illness (Jessica Kingsley must-read for parents of PHers! Publishers, 2008) covers many I found the thoughts and important topics that parents need to emotions of the parents in the book navigate while raising a family with a to be my own. There were numerous chronically ill child. Sharon Dempsey times when I would stop and think, "I wrote this book based on her could have written that paragraph!" I Melissa with her daughter Evelyn, a PH experiences parenting her son, who particularly connected with the chapter patient, and son August had a terminal brain tumor, along with "The Diagnosis Disclosure," and since input from other parents of chronically ill children. Although this was the first chapter, I was instantly engaged in the it isn't written specifically for families of PH children, the book. information fits easily into situations we encounter. This book made me feel that I wasn't alone. At the The book is written in an easy-to-understand time I was reading it, I was pregnant with my second child format that leaves the reader feeling empowered to be and very interested in how to balance the needs of my his or her child's advocate. It completely validates the PHer with another child in the house. I found information experiences of the parents, the ill child and the other in this book on ways to approach future family dynamics. family members. It also takes into account different It was a good refresher to read about the things I was responses and needs based on the age of the child already navigating, and it reaffirmed how I was handling (infant through teenager). This book covers situations them. It gave a detailed glimpse into a variety of aspects including diagnosis, treatments/hospitalizations, school that we, as parents of a PHer, have to cope with daily. If I experiences, communicating with others, sibling dynamics, ever need to explain the extra stuff I need to think about support systems, day-to-day living, and end-of-life issues. as a parent of a PHer, I will recommend this book. w Sharon writes, "Owen taught me how to parent to the best By Melissa Keltgen, Parent of a Child with PH of my ability. He showed me how, in the face of adversity, f amily pho c u s Check Out This Book: Extreme Parenting: Parenting Your Child with a Chronic Illness 2011 Member Appreciation: Magnet Mania! Fall Member Special Raise awareness on the go with a PH Car Magnet! Only PHA Members are eligible for this special, limited-time offer. Order now through January 5 at the PHA Online Store, www.PHAssociation.org/ Store or give us a call. Not a member? Visit www.PHAssociation.org/ Join to become a member of PHA today! Special Offer: October and November Only Receive a “PH Resources at Your Fingertips” magnet when you join or renew. Any new or current PHA members who join or renew during the months of October and November 2011 will receive a “PH Resources at your Fingertips” magnet in the mail. This newly revised magnet features PHA’s Patient-to-Patient Support Line number, as well as specialty pharmacy helplines and medication information phone numbers. Questions? Call the PHA Office at 301-565-3004. Now Only $3, Will Be $5 After January 5 Join or Renew Today to Get Your Magnet! Produced through an unrestricted education grant from Curascript PATHLIGHT FALL 2011 Patient-to-Patient Support Line: 1-800-748-7274 51 Passages is PHA’s way of honoring those who have lost their battle with PH, as it has been since the very first Pathlight was published in May 1990. As we learn of patients’ passing, we inform the PH community. PHA extends sympathy to the families and friends of those who are gone but not forgotten; each Pathlight is dedicated to their memory. Darcie Arnold Doris Baker Eileen A. Benrud Renee M. Birt Kelly L. Bratcher Paula Brummer Al Buccigrosso Steve Calkins Xochilt Castellanoz Alan Champion Brian W. Connell Colleen Cumbie Sheila K. Duggan Ellen Erickson Robert C. Ford Joseph Gargagliano Mallory L. Goggans Roberta L. Granai Donna Guerri Karen S. Gunn Fred Helms Chris M. Herrmann Sylvia Kalish Anne E. Kenny Jack E. Keough Phyllis Landau Margaret LeBlanc Lynn Lubitz Kay May Kevin John Mueller Robert A. Osgood Katie N. Parsons May Alethea Pergament Leslie Phillips Patricia Ramos Judith Ann Retzloff James Rudd John J. Siegmund Richard Shepsko Carolyn D. Stallings Constance Tinker Chelsea Ann Umbach Yates Charles VanAllman Cheryl Vaughn Ashleigh White Billie L. Wrigley The accuracy of this list is very important to us. Please contact the PHA office at 301-565-3004 x756 or [email protected] to have a recently deceased loved one’s name listed in Passages or to report errors or omissions. For those for whom it would be helpful, PHA has developed a resource, Mourning a Loved One: A Guide to Grieving, which is available at www.PHAssociation.org/Caregivers/Bereavement. For more information, or to request a print version of this guide, please contact [email protected] or 301-565-3004 x800. We welcome all loved ones to remain a part of our community for as long as it is beneficial. In memory of DONATIONS LISTED WERE RECEIVED Between June 1, 2011, and August 31, 2011. PHA IS DEEPLY GRATEFUL TO THE PH COMMUNITY FOR ITS EXTRAORDINARY SUPPORT. Take a Look! Sustainers Circle Members Recognized PHA recognizes members of our Sustainers Circle in the donations lists. Look for a symbol to see who has made a sustained commitment to donate to PHA on a monthly basis. If you are not a member of our Sustainers Circle but are interested in joining, visit www.PHAssociation.org/Donate/SustainersCircle or call Jennifer at 301-565-3004 x756. You may also use the remittance envelope enclosed in this issue of Pathlight. Lynnda Abels Ms. Sherry Veldhuizen Marjorie S. Addis Mr. Robert G. Addis Larry Adkisson Mrs. Peggy Adkisson Maritza M. Alicia Mrs. Leticia Bido Mr. Riscardo Alvarado Ms. Jasmine Cordero Ms. Amy Elise Ms. Sara Eve Ms. Claire Greed Ms. Jacqueline Hallenbeer Mr. Jack Halvin Ms. Veronica Jackson Ms. Rosemary Kita Mr. Rob Komurek Mr. Jay Legaspi Ms. Eileen Linder Mr. Hector Maldonado 52 Ms. Johanna Martinez Ms. Yvette Mercado Ms. Sandra Monforte Ms. Bahia Munem Mr. Marasri Muthikul Mr. Marimer Navarrete Ms. Katalina Nieves Ms. Ana Nunez Mr. John Ottomanglui Ms. Lisa M. Perez Monica G. Allen Mr. and Mrs. Jack J. Marino Mr. Peter Marino Mr. and Mrs. Ronald G. Robinson Juanita Anderson Mrs. Tammy Chapman Terri Anderson Allan and Virginia Cornett Mayer R. Armbrust Ginger and Michael Drago Sarah Ann Atkinson Bemis Associates Inc. Mr. Gary S. Atkinson Carolyn J. Barra David and Barbara Barra Hope C. Bennett Lisa W. Wheeler, MT Eileen A. Benrud South Bay Resources, LLC Ms. Margaret Curtis Mr. Shawn O'Rourke Gilbert Ms. Joanne Grego Mr. Thomas Hix Ms. Diane Jorgensen Iris and Mike Othro Sarah Berg Jack & Barbara Glick Wiener Dorothy I. Berube Mr. James Pappas Gloria Biesemeyer Ms. Kami Biesemeyer www.PHAssociation.org PATHLIGHT FALL 2011 Fritz W. Bleese Ms. Donna Marie Desiderio Mark and Suzanne Fronczkewicz Louann Haydock, John J. Dillon, Jr. and Frank Szczucki Jane A. Miller and Chuck Thomas Candi C. Bleifer Mr. and Mrs. Edwin L. Simpson William Borkin Bill and Debbie Stanley Norma J. Branch Mr. Robert J. Branch, Sr. Jeanette Brant Mr. Dennis M. Brant Kelly L. Bratcher Ms. Louise F. Ball Ms. Elizabeth Boyce Mrs. Arbutus Collins Carolyn A. Cunningham, ARNP Ms. Teresa A. Dillree Ms. Janet Green Mr. James T. Jeffries Mr. Robert A. Kohn Ms. Rebecca L. Koopman Mrs. Gail Longardner Mr. Vaughn M. Stevens Mrs. Barbara Stonebreaker Paula Brummer Mrs. Julia Ancell Ms. Marylyn Bell Mrs. Susan M. Black Ms. Kimmie Burton Ms. Dana Cabbell Ms. Eilene Cabezas Ms. Deborah Calcaterra Mr. Seamus Gerald Carey Mr. Victor Carlos Ms. Stacey Carlos Mr. Oscar Caro Mr. Omar Caro Mr. Christopher Carothers Ms. Aly Carpenter Ms. Megan Carter Ms. Diane L. Castrey Mr. Bill Castrey Mr. Edris Chambers Ms. Melinda M. Chisick Ms. Grace Choe Mr. Mel Co Ms. Kimberlee Cobb Ms. Kim Coelho Mr. Tyler Collister Ms. Lara Coons Steve and Nedra Cooper Ms. Jacqueline Cordova Mr. Sean Corrigan Ms. Elizabeth Coyne Ms. Lyndsay M. Cozort Mrs. Suzanne A. Crider Mr. Ryan Czudak Mrs. Gunilla Davidson Mr. Joseph Deacy Andrew and Viviana Dean Mr. Raymond Del Puerto Ms. Jessica Del Rio Ms. Erica Deleon Mr. Mark Demkiw Ms. Jill DeNiro Mr. Skyler Deutsch Regina and Joseph Devartanian Mr. Stanley Douglas Mrs. Deanna Drum Mr. David Allen Duarte Mr. Andre Dumaine Ms. Sheryl Eberly Ms. Annette Ekelius-Chow Ms. Natasha Emmrich Diane Endo-Okada, PharmD Mr. Santiago Enriquez, Jr. Ms. Wendy Escano Mr. Oscar Escobedo Mr. John Ewonce Ms. Grace Fairchild Ms. Anita O. Fiallo Mr. Aaron Fink Mr. Clay Finn Ms. Linda Fisher Mrs. Debra L. Fitts Mr. and Mrs. Richard C. Florez Ms. Kandy Folliott Ms. Janet French Mr. Steve Friedrich Ms. Kathryn Fujita, PharmD Ms. Patty Gaby Mr. Ismael Galindo Ms. Monique Gallardo Ms. Veronica Galvez Ms. Jennifer Garcia Ms. Ashley Garlick Mr. Nicholas Geist Mr. Paul Gendron Mr. Russell Giess Ms. Beau Gombos Ms. Teresa Yumi Gooch Ms. Tracy Gooch Mr. Mike Goodnight Carl and Maria Gottuso Ms. Cindy Green Ms. Courtney Gress Ms. Lisa Grisotti Ms. Rhonda Guilin Mr. Steve Gunzenhauser Mr. Brady Gutekunst Mr. Joe Gutierrez Mr. Gregory Hahn Ms. Susan Harker Mr. Jeffrey L. Hart Ms. Betsy Harvey Mr. Sean Hayes Mr. Richard Heim Ms. Amanda Hernandez Mr. and Mrs. Jose Hernandez Miss Amber Hernandez Mr. Larry Herschler Mrs. Tracy L. Hittesdorf Ms. Chloe Hoben Ms. Janet Hohenstein Ms. Valerie Holden Ms. Cheryl Holstrom Ms. Melissa K. Hommey Mr. Steven P. Honma Ms. Linda Hoogendoorn Mrs. Amy Huhn Mrs. Diana Imber Mr. Andrew Imparato Mrs. Cynthia Inman Ms. Heather Irwin Ms. Marie Isip Ms. MyKayla Jackson Mr. Rod Jadczak Ms. Meredith Jarigese Mr. Donaldo Jauregui Mr. Jarod Johnson Maddie and Cody Jones Ms. Christy Jones Ms. Julia Kemp Mr. and Mrs. Kyle Kierulff Ms. Kim Kierulff Ms. Courtney King Mr. Steve Kirschner Mr. Chris Koutures Ms. Mary Kraszewski Ms. Kris Kratky Ms. Andrea Kratky Mr. Robert Krohn Mr. Doug Kuczaj Ms. Gina Lamph Ms. Jamie Laussade Ms. Jessica Lawson Ms. Sara Leonard Ms. Karen Lesser Mr. Dave Lewis Ms. Melissa Leyva Mr. Marcus Little Ms. Lorna Liu Mr. Mike Lowrie Mr. Edward Lowrie Ms. Jesse Luchansky Ms. Brigitte Ludwig Mr. Michael Luquin Ms. Hayley Macabuhay Mr. Vincent Macabuhay Ms. Maria Macias Ms. Jennifer Maguire Ms. Bridgett Maheu Mr. and Mrs. William Markov Ms. Annabelle Marlow Ms. Marianna Marroquin Ms. Linell Mathisen Ms. Dana L. McElroy Mr. Marc McGinnis Mr. Dennis McGuuern Mr. Michael McIntosh Mrs. DeeDee McNally Mr. Sean P. McNally Ms. Almaz Melaku Ms. Nely Mences Ms. Nicole Mesa Mr. and Mrs. Bill Meyer Mrs. Allison Meyer Ms. Alejandra Meza Quinto Ms. Charisee Mezzo Mr. Andrew Minarik Mr. Kenneth Misken Mrs. Kristi Ann Mitchell Ms. Meagan Montelongo Ms. Lori Moore Ms. Jessica Moran Ms. Carla Moreira Ms. Kim Morgan-De La Paz Mrs. Chris Morrell Mrs. Christina Morres Ms. Alisha Munger Mr. Carlos Murillo Ms. Lauri Nelson Mr. and Mrs. Chris Nelson Ms. Doan Thuc Nguyen, PharmD Ms. Emily Norausky Ms. Karen Normandeau PATHLIGHT FALL 2011 Ms. Julia Normandeau Mr. Tommy Normandeau Ms. Elaine Noster William and Debra Noyes Mr. Patrick Ochoa Ms. Allison Odegard Ms. Karyn Olsson Ms. Cynthia Osborne Mr. Danny Padilla Mr. Juan Palacios Mr. Marcos Pando Mr. Randy Pangborn Mrs. Jill Parris Jukam Mrs. Eve M. Parsons Ms. Angela Pattison Ms. Victoria Paul Ms. Amanda Pearson Mr. Jeff Pell Mrs. Diana M. Perez Ms. Amy Perkins Ms. Robyn Perry Mr. Mark Perry Mr. Dylan Phillips Mr. Jackson Pinson Ms. Danielle Pinson Ms. Anna Prieto Ms. Kerry Prindible Ms. Susan Prior Ms. Diana Elizabeth Quintanilla Ms. Lisa Ramsey Ms. Judy Ramsey Ms. Jennifer Reardon Mrs. Mariann Rederscheid Mr. Adan Renteria Ms. Michele Riley Ms. Teresa Rineer Ms. Maria L. Rios Ms. Emeline Rios Ms. Amelia Robeck Ms. Yvonne Roblero Ms. Lindsey Rodgers Mr. David Rogers Mr. Robert Romero Ms. Rosemarie Rush Ms. Paige Sammons Mr. Gerardo R. Santos Ms. Kim Saugstad Ms. Nathalie Savinon Mrs. Anette Schaller Ms. Julia Schmidt-Petersen Mrs. Tandee Scott Mrs. Jennifer R. Serynek Ms. Amanda Shaw Harley and Turner Shelton Ms. Lisa Silveira Mr. Brandon Smith Mr. Gary Smith Ms. Debra K. Splane Mrs. Debbie Spozarski Mr. Christopher Stepien Mr. Mark Steuer Mr. John Strand Mr. Ed Swan Ms. Ann Swigget Mrs. Jeane M. Szwarc Mr. Rob Tackett Bob and Marva Tagg Ms. Kimmy Tanaka Ms. Dina Taylor Ms. Karen Taylor Ms. Carrie Teixeira Ms. Candace Thompson Ms. Jane Tittle Kenneth and Kristen Toblesky Mrs. Valentina Tokareva Ms. Gabriella Toth Ms. Hilda Trujillo Ms. Jennifer Tushla-Sanchez Ms. Jami Tyler Ms. Maria Valdez Ms. Joanna Van Mr. Andy Van Driesen Mr. and Mrs. Steve Van Wormer Mr. Joe Vanderbilt Mrs. Elizabeth Vergolino-Holiday Mr. Greg Verheyen Ms. Julie Wall Ms. Kelly Wambaugh Mrs. Lorraine Ward Patient-to-Patient Support Line: 1-800-748-7274 DONATIONS : IN MEMORY OF Mr. Johnny Bolte Mrs. Eileen Bolte Mrs. Debora K. Breneman Mrs. Barbara Corpstein E. R. Holman Mrs. Letha D. Keeler Mr. Steven K. Meier Mrs. Karen R. Nelson Mrs. Sheila M. Thompson Mrs. Norma Thompson Mr. Gregory Walker Mrs. Donna Walker Rebecca J. Butler Alpha Gamma Delta, Delta Rho Chapter The Kirlin Company Camm and Sue Epstein Ms. Jacqueline F. Floyd Eugene and Louise Goodale Dr. and Mrs. Daniel A. Grant Susan Griffin, MD Ms. Mary Margaret Jones Mr. Joseph E. MacDonald Tim, Janet, Eric, Kara and Lauren Miller Joan Butlien Dr. Donald Butlien James B. Butts Ms. Diane F. Stream Rhonda Bye Ms. Dorothy Arbiter Ms. Deborah L. Bielski Ms. Cathy Brown Ms. Susan K. Buckley Ms. Connie Bumpus Ms. Carol Comstock Gerald and Brenda Goeckerman Mr. Ronald S. Goeckerman Al and Marian Grigsby Antonio and Mary Guernica Ms. Ila J. Lueck Taylor R. Caffrey California Boring, Inc. Boge America Inc. Stanford University Medical Center Orange County Screw Products, Inc. Rock N Road Cyclery United Therapeutics Corporation Pacific Contours Hi Products/Salon De'Dawn Kohl's Blooms N Bows NRG Sports Nutrition, Inc. Ms. Shannon Adams Ms. Catherine Adcock Azita Adelynia, MD Mr. Jeff R. Alexen Ms. Adrienne Alexen Ms. Beverly Alterman Mr. Luis Alvarado Mr. Louie Alvarez Robert and Catherine Arnold Mrs. Lisa Augustine Mr. Jose Ayala Mr. Marshall Ball Mr. Christian Balsz Ms. Krisondra Barrios Ms. Molly Bauer Mr. Brian K. Baur Ms. Julie Bebich Mrs. Denise M. Behle Mr. Andrew A. Benavidez Ms. Jennifer Berger Mr. Mark Birza Ms. Michelle Bishop Ms. Mia Bissonette Ms. Eva Bogart Ms. Christa Bohnhoff Ms. Karen Borrego Ms. Taylor Bostick Mr. Christopher Boyle Ms. Sheree Brewster Ms. Pauline Bridgman Ms. Avery Brinkley Ms. Rosalie A. Brown Ms. Taylor Bruestle Mrs. Andrea R. Brunk Ms. Becky Bunch Ms. Kimmie Burton 53 DONATIONS: IN MEMORY OF 54 Mr. John T. Waring Ms. Hannah Waring Mr. Nathan Welter Ms. Barbra Westmore Mrs. Karen Westmoreland Ms. Crystal White Mr. and Mrs. Jim White Mrs. Cathy Wiese Ms. Ava Willis Ms. Kindra Wilson Ms. Mary Witten Ms. Mary Wixted Ms. Betty Lou Wojciechowski Ms. Lauren Wright Mr. Greg Wright Ms. Donna Wyatt Ms. Beverly Young Ms. Kristina Zeller Gary R. Cardwell Ms. Janet Kapella Angelyn Casida Col. Gary V. Casida Alan Champion Landmark Church AFPEO-BES/HIZG Marilyn and Robert Fowler Barbara and Paul Fuller Mr. Sam Kora Mrs. Betsy L. Poole Kenneth Charity Mrs. Theresa Woodard Nancy Cobb Dr. and Mrs. Joseph J. Cramer Joan M. Cole Mr. Paul M. Cole James W. Coleman Mrs. Diane Krolikowski Ljungquist Brian W. Connell Ms. Jean L. McNamara Kelli Cornett Allan and Virginia Cornett Ryan Corr Mr. and Mrs. Lee Engel Christen W. Cranford Rev. Dr. Ann Winsor Leigh A. Culmer Ms. Carla Farr Helen Culp Mr. and Mrs. Steve Belew Debra A. Curran Ms. Lorine Hughes Amy Curry Mrs. Anita Williams Christina Dallas Ms. Sonja Ackerman Mrs. Deborah K. Erickson Mrs. Kristi M. Gausman Mrs. Alisa Goetch Mr. John E. Nelson C. Norris Nelson Joyce Dau Mr. Bruce Dau Maria De Marco Mr. and Mrs. Vincent De Marco Gregory A. Dembski Ellen and Fred Woods Mary Dinquel Ms. Rita DeSollar Mr. Jack C. Dinquel Max Doktofsky Mrs. Sara Doktofsky Dolores Doria Ms. Laura Doria-Djenfer Arnold Drechsel Jan and Doug Kepplinger Patricia J. Drury Ann Marie and Dennis Anderson Mrs. Diane Bledsoe Ms. Linda Kay Toland Sheila K. Duggan Operating Room at Sturdy Memorial Hospital Mr. and Mrs. Timothy M. Cayton Mr. and Mrs. John DeCosta, Jr. Mr. John Duggan Mrs. Rosaline Duggan Mr. and Mrs. Mark F. Fitzmaurice Mr. and Mrs. Jason Gabriel Ms. Helen Gee Ms. Marlene Jew-Geralds Brad and Beth Johnson Ms. Mary L. Kennedy Mrs. Maria Microulis Ms. Joann Trojano Ms. Lorolie M. Wishart Bonnie Dukart Ms. Renee Chirtel Mr. Michael J. Tuteur and Amy Tuteur, MD Chad Ellenwood David and Connie Sacherman Allison Erb Mrs. Heidi Baker Ellen Erickson Dr. and Mrs. Earl S. Beaver, DVM Ms. Marcia J. Brown Mr. Robert Carpenter Mr. Darryl L. Decker Mr. Richard Drabek Mrs. Michelle L. Dupuis Ms. Donna Gross Mrs. Corinne Miller Mr. Robert Rudd Susan Eschbach Mr. and Ms. David Eschbach Mrs. Elizabeth Melady JoAnne R. Eshleman Mr. Dallas O. Eshleman Jennifer Fabian David and Mary Viscounty James F. Farrell Joseph and Ann Farrell Horace and Kathleen Herzog Tiffany M. Fasci Mrs. Debra Testement Alfred P. Fishman, MD Charles D. Burger, MD Brian Hanna, M.D., PhD Dr. Marshall and Dr. Denice Hertz James E. Loyd, MD Michael and Bonnie McGoon Sean M. Studer, MD Mr. Todd Tartavoulle, MN Terence K. Trow, MD Kimberly A. Flinchum Betty and J. R. Martin Robert C. Ford Tighe & Bond Church of Our Lady of Mercy Mr. Scott Brenner Mr. Brian Coughlin Ms. Mary Beth Doherty Ms. Julie Garland Ms. Paula Gaylord Ms. Beth Hancock Ms. Jacqueline R. Javier-Burns William and Marilyn Kuehner Mr. Marc Matalon Mr. Joseph Morano Mr. Joe Nattress Mrs. Sandra E. Santos-Vizcaino Ms. Catalina Saunders Mr. Shawn Smith Martha Darlene Foster Mrs. Patricia K. Crabtree Alan Freid Ms. Sharyn E. Fox Arlene Gabbert Mr. Richard L. Gabbert June C. Galusha Priscilla and Joseph Montelone Joseph Gargagliano Nanette and Ronald Ackerman Mel and Audrey Baron Ina and Chick Chase Ms. Myra Haberman Mr. Ed Irwin Janet K. Kirschenbaum and Freddy Etter Miriam and Jack Mendelson Tiffany L. Garza Ms. Linette Connick Mary E. Geisdorf Miss Phyllis Geisdorf Blossom Gelernter Carol and Michael Aronin Mrs. Carole Clarin Ms. Rosanne M. Ferdico Herbert and Jane Gardner Ms. Karen Gordon Mr. and Ms. Paul Groenwegen Mr. and Mrs. Herman Libowsky Dr. and Mrs. Daniel Mangold, MD Mr. and Mrs. Bob Pomeranz Ms. Susan Tepper Merry Tucker Mrs. Marcia Vevier Ellie Godina Mr. Charles J. Nusbaum Mallory L. Goggans Centre College Ms. Martha B. Akin Mrs. Sarah Donaldson Donnie and Anita Donselman Dr. and Mrs. Jim Duncan Ms. Mary Kay Godbey L.T., Glenda and Bette Goggans Joseph and Patricia Kemper Maggie and Brad Kitterman Mr. and Mrs. Robert K. Lewis, Jr. Ms. Sherry F. Martin Warren and Phyllis Miller Dr. and Mrs. Rick Nallinger Bill and Marti Pollom Reed and Colleen Sanders Ms. Ann Silver Mrs. Sara D. Turnbull Kenneth and Pauline Wall Barbara B. Goodin Gloria Montfort and family Mrs. Freda O'Reilley Gene and Mary Schmeltzer Mr. and Mrs. Steven L. Todd Anne Gottbrath Mr. John Gottbrath Roberta Granai PH Support Group: Ft. Myer Mr. and Mrs. Rino Aldrighetti Richard and Rita Brown Ms. Amanda Butts Ms. Micaela Cohen Laura Hoyt D'Anna, DrPH Ms. Adrienne H. Dern Mrs. Emily Dugan Ms. Diane M. Greenhalgh Ms. Carsten Hailey Miss Jennifer M. Kaminski Mr. Arsène Koissy Mrs. Patricia Lalley Ms. Kathleen Lucadamo Ms. Megan Mallory Mrs. Jillian McCabe Mr. and Mrs. Gerald D. Paton Ms. Nancy Riedl Ms. Patricia Scuderi Mrs. Rebecca L. Sherman Jack and Marcia Stibbs Ms. Betty Lou Wojciechowski Floyd J. Green Mrs. Junia M. Green-Eufers Eve L. Greenstein Mrs. Susan H. Blake Mrs. Jody M. Harrison Mrs. Kimberly M. Hurley Ms. Kelly C. Spratling Ms. Peggy M. Stecker Jennifer R. Grote Main Source Bank Bob and Janet Bedel Mr. Chad Grote Mrs. Emily Hasselbeck Kenny and Judy Mauer Ms. Laura Moorman Ms. Carol Carolyn Peters Ms. Linda L. Volk Mr. Jim Weber Edward Hale Ms. Sharyn E. Fox Sandra Lee S. Harp Ms. Mary Jan Sawyer Marie C. Harshman Mr. Ronald D. Harshman Elaine Hatchett Ms. Barbara L. Hatchett-Smith Marlene Henson Mr. Jerry C. Henson www.PHAssociation.org PATHLIGHT FALL 2011 Harvey Herer Mr. and Mrs. Norman Goldwasser Jamie M. Herskowitz Mrs. Jean Herskowitz Jean Hess Ms. Carole D. Tyler Mima Hessel Mr. Gary N. Hessel Frank M. Hetrick Ms. Jean Clemmer Sherod and Janet Cooper Ms. Rosemary Deering Janet and Ray Doetsch Janice and Michael Doyle Carol and George Fellows Frank and Elizabeth Fellows Ms. Lurraine S. Gettier Mr. W. H. Hahn Ms. Melissa D. Harp Ms. Julie K. Hetrick Sam and Marianne Joseph Ms. Virginia D. Keeler Mr. Steven A. Keller Mr. Mike Keller Ms. Judith M. Korn Ms. Darlene Lehr Rudy and Debbie Lukacovic Mr. William E. Markle Mr. Floyd E. Matthews Mrs. Barbara J. Miles Mrs. Marlene F. Moul Mr. and Mrs. Jack Myers Wesley and Connie Paulson Robert and Maura Reiver Dr. Daniel Stein Ms. Mary Ann Summer Mrs. Alice G. Tyler Robert and Joy Wiley Mallory Hicks Birchbark Books Corporate Car & Coach JW International, Inc. FBR Capital Markets Charitable Foundation Mr. John Aagenes Mr. Clayton Abrahamson Ms. Susan L. Anderson Royal and Brenda Ashburn Mrs. Emily Baird Ms. Janice Barker Mrs. Lynn Bauch Mrs. Patricia A. Berg Mrs. Gretchen R. Boman Mrs. Marissa Bonk Mr. William G. Browning Ms. Hanna Buckley Ms. Anne Marie Bulger Ms. Dina Carpenter Mr. David M. Clark Ms. Carolee Cohen Mr. Thomas Corcoran Ms. Beth Derenne Ms. Nancy Kathlee Doyle Ms. Tannis Dursse Mr. Brandon Engebretson Mr. Benjamin Gifford Mrs. Helen T. Gleason Ms. Julie Graves Mrs. Beth C. Grendahl Ms. Shannon Guernsey Ms. Heather Haars Ms. Janet Hafner Ms. Joey Hall Mr. Marcus Hanson Mr. Michael Hayes Mr. Ed Hershberger Ms. Angela Hershberger Ms. Marissa Hill-Dongre Ms. Amy Hoppe Mr. Charles O. Howard Mr. Juan Hoyos Ms. Tara Hutson Ms. Christina L. Kanter Ms. Chrissy Kelsch Mr. Brendan Kennedy Ms. Ivy Klassen-Glanzer Ms. Michelle Knosalla Ms. April Ane Knutson Mr. Benjamin Krekelberg Emmet D. King Mrs. Marie S. King Jennifer F. King Mrs. Susan J. Phelps Ms. Mary E. Redmond Jerry Kingdom Mr. and Mrs. Jack J. Marino Charles Kiser Mrs. Rosalie Kiser Kenneth A. Kish Mrs. Marie Kish Alice N. Klucsarits Ms. Ann C. Fitzgerald Teresa Knazik Ms. Gail Hand Lois J. Koch Mr. Richard C. Koch Tani K. Koppelman Cynthia and Frank Koppelman Dr. and Mrs. Mitchell Koppelman Elizabeth A. Lait Ms. Charlene M. McElhinny Phyllis Landau Arlene and Bernard Greenstein Natalie Lapidus Mr. Mark Lapidus Margaret LeBlanc Mrs. Judith A. Abbott Mr. Donald E. Barlow Ms. Kimberly D. Beal Mrs. Audrey Belanger Mr. and Mrs. Paul Boissonneault Mr. Peter A. Carbone Ms. Mary Cocasio Mr. and Mrs. Luther Colby Ms. Doris B. Comeau Albert and Carlene D'Arcangelo Joseph Davenport and family Mrs. Janice G. Filteau Mrs. Virginia Fournier Charles and Joan Gagnon Mr. Fred Gamester Mr. Kenneth E. German Ms. Pauline M. Greenleaf Ms. Denise Griffen Peter Zavalianos and Brenda M. Houde Mr. Edward Jean Mrs. Lois Johnston JoAnn and Stephen Lagasse Julie and Jack Leblanc Mr. and Mrs. Jerry Migneault Mr. Richard Moon Mrs. Chantal Morneau Mrs. Susie Morneault Ms. Carol E. Perlino Mr. Louis M. Pulzetti Ms. Marilyn Rafferty Ms. Jamie Rajotte Tremblay Mr. and Mrs. Maurice E. Ravenelle Ms. Patricia Reynolds Dr. Sharon Riedell and Mr. Bruce Riedell Ms. Maybelle W. Rival Steve, Annmarie, Andrew and Nicole Rogers Ms. Evelyn R. Royer Mr. Ely N. Scott Ms. Veronica A. Sheehan Ms. Georgette G. Stryeski Mrs. Sandra J. Sudol Ms. Juliette M. Tardiff Mrs. Helen Tripodis Archimedes N. Valhouli, CPA Mrs. Janice M. Vinci Mrs. Judith G. Wengel Mr. and Mrs. Robert Wethington Ms. Ethel M. Ziemba Lewis Little Mr. Richard E. Little Willard Ljungquist Mrs. Diane Krolikowski Ljungquist Alice M. Majdecki Mr. Jerome Majdecki John J. Majewski Ms. Camille M. Majewski Randy Mallick Co-workers at Positive Health Clinic American Federation of Govt Employees Neville Island Presbyterian Church Mr. Ober Blair Mrs. Merry Lou Faett Melvin and Genevieve Hyatt Don and Audrey Mallick Mrs. Angeline Tallerico Robert Volosky, MD Mrs. Joan M. Williams Mrs. Sandra Witt Mary Marino PH Support Group: Ft. Myer James A. Martin Path to Prosperity Inc. Haney & Associates, Inc. Flintridge Family Chiropractic Equity Saver Construction, Inc. Crestwood Corporation California Fleet, Inc. Mrs. Tatiana Alamo Boykin Mr. William Alexander Mr. Daniel Alvarado Ms. Veronica Amici Ms. Lindsay Amstutz Mr. David Anzivino Ms. Susan J. Baker Mr. Steve Bao Mrs. Marianne Barrosa Mr. Pete Beck Mrs. Sara Beemer Mrs. Erika Bolger Ms. Mary T. Bourdow W. L. Bowen Mrs. Judy Brink Mr. Jonathan C. Broome and Ms. Ornah Levy, Esq. Ms. Nancy Butler Wolf Mr. Stephen Byron Mr. Chris Calleton Ms. Elizabeth C. Camarena Mr. Travis Carr Mrs. Kelli Carroll Ms. Mimi Cash Ms. Caroline Catalan Ms. Samantha Celera Mr. William Chambers Ms. Debbie Chavez Alma and Juan Chavez Mr. Carl Cohen Mrs. Angela Cole Mrs. Susan M. Consorte Mr. Simon Coombes Mr. Peter P. Costa Ms. Amber Crezee Ms. Andrea Cruz Edgardo and Kay Cuellar Mr. John Daley Veronica and Hope Dawkins Mr. Daniel A. Deeb Ms. Stacey Deniz Mrs. Stacee Derouchey Ms. Sheial Dowling Ms. Dorothy Duong Mrs. Terrie Esparza Ms. Carrie Espinoza Mr. Andrew Ewing Lois and Seyi Famuyibo Mr. Scott Ferguson Mr. Michael Fine Ms. Ivy Flores Ms. Tyler Freeberg Mr. Marijo Gallim Mr. Joseph Garant Mr. Daniel Garvey Mrs. Susanne Gasparo Mr. Edwin Terrell George Mr. Jeff Gibson Mr. William Goodman Mr. Kevin Gore Mrs. Sylvia Gore Mr. Paul Gregery Mr. Richard Grise Mr. Spencer Groce Mr. Edmund Gutierrez Mr. and Mrs. Clark Hahne Ms. Diane Hahne Mrs. Christina Hahne Mr. Ashley Hancock Mrs. Mary Hannigan Mrs. Diana Henderson PATHLIGHT FALL 2011 Mr. Matthew Hillier Mr. Sam Huang Mr. Andy Hubsch Mrs. Kori Icardo Ms. Adele Jaureguy Ms. Lisa Jones Mr. John Kane Ms. Kathleen Kelly Mrs. Elaine Kelly Mrs. Christina Kelly Mr. Philip Kendall Mrs. Lani Kienker Mrs. Dayl Kiesendahl Ms. Helena King Mrs. Kellie Klein Mr. Joseph A. Kunkle Ms. Genevieve Laguna Mr. Anthony Lang Mrs. Sarah Lantz Mr. Thomas Larocca Mrs. Vickie Lawrence Ms. June Lee Tomorrow Leigh Ms. Melissa Lopez Mrs. Martha Lucio Mrs. Jennifer Mandzok Mr. James A. Martin, Jr. Mrs. Bernie Martin Mr. James Martinez Mr. Masaru Matsuda Mrs. Margaret Matthews Ms. Erin McCullaugh Dr. Michael McDonnell Ms. Gina McPheron Mr. Rudolph J. Megaro Ms. Diane Meglino Mr. Robert Morales Mr. Stephen Morris Ms. Suzanne Morris-Sherer Mrs. Carey Moyer Mrs. Suzanne Murray Mrs. Susan L. Nuveman Mrs. Concetta Offenback Mrs. Carol Offenback Mrs. Erin Ortiz Ms. Audrey Ourique Mrs. Niki Padayao Ms. Melody Petrossian Mr. Aaron Prince Mr. Steven Puodziunas Mr. Michael Raich Mrs. Alexandra Rangel Ms. Elissa Refold Mr. Mark Richardson Mrs. Marty Rodriguez Ms. Maria L. Samonte Mr. Robert Sibbrel Mr. Gary Slavin H. E. Smith Mrs. Ann Steichen Mr. Brian Stewart Mrs. Jackie Stoops Mrs. Wendy Turner Mrs. Christy Valaskantjis Mrs. Jennifer Vasquez Mr. David Vogel Mr. Doug Wade Mrs. Elaine Wanstrath Mrs. Ellen Wellman Mrs. Brooke Wheeler Mr. Benjamin Will Ms. Deborah Wolery Ms. Colleen Wynn Mrs. Rosemarie Yu Mrs. Jennifer Zampiello Mr. Marty Zampiello Mr. Philip Zampiello Ms. Barbara Ziegler Ms. Jean Zielinski Heather Massey Frank and Carol Bruno Mr. Carl Jones Juanita and Paul Webb Maribeth S. McCarthy Ms. Jean Sheridan Lisa W. Wheeler, MT John M. McCullough Mrs. Donna M. McCullough Patient-to-Patient Support Line: 1-800-748-7274 D O N A T I O N S : I N memory O F Ms. Lynne Krekelberg Ms. Elizabeth R. Langer Thomas and Stephanie Layer Mr. James M. Lee Mr. Eric Leonard Ms. Alison Lindburg Mr. Mark N. Lystig Mrs. Erin H. MacBean Mr. Wesley Marquette Ms. Corinth Matera Mr. Shawn McArthur Ms. Maria Meade Ms. Debora Mevissen Ms. Laurie C. Meyers Mr. Erik Meyers Ms. Lydia L. Monahan Mr. Roger Nelson Ms. Kelly Olmstead Lois and Preston Piper Mr. Pierre O. Piper Ms. Gergana Radinova Ms. Diane Radischat Mr. Tom Schoenborn Ms. Paulette Schwen Pete and Sheryl Schwen Mrs. Kelley Skumautz Mrs. Kristin Stelljes Ms. Erica Stordahl Ms. Megan Sutton Mrs. Tammy Tauferner Ms. Anita Thies Ms. Emily Tice Ms. Nikki Tollefson Ms. Angela Tucker Ms. Sherry Van Slyke Ms. Tracy Van Slyke Ms. Melanie Walsh Mr. Michael Walsh Mrs. Barbara L. Walter Ms. Anne Walters Mr. Kenneth Williams Ms. Amy Wockenfus Ms. Ann E. Wolfe Meaghan Hicks Mr. Michael Baker Michael and Cathie Baker Mr. and Mrs. Edwin L. Simpson Judy Marie K. Hockett Mrs. Heidi Baker Vivian J. Hoff Mr. William A. Hoff Mason E. Hoffman Mr. Dale Hoffman Thomas W. Holloway Mrs. Donna Holloway Patricia M. Holt Mr. Douglas L. Holt Rachel Hoyt Laura Hoyt D'Anna, DrPH Mr. and Mrs. Lee Hoyt Annette C. Hulsey Ms. Jackie H. Brown Stanley Hunt Mrs. Nancy H. Hunt Melba Jones Mr. Walter Neuman Tamlyn Jordan-Parks Mr. Christopher Parks James Justin Mr. David P. Justin Sylvia Kalish Mrs. Esta Goldstein Mr. and Mrs. Mel Gorenstein Mrs. Rita Kershner Harvey and Penny Minkoff Mr. Jerry Rokoff Lewis and Janice Stolar Lisa A. Kannas Paul and Alice Heinz Megan E. Kelly Mrs. Jeanne M. Woods Anne E. Kenny Barbara and John Ambre Sheila and Vincent Gargano Ms. Linda J. Girardin Ms. Mary E. Gorman Mr. Jamie Serino Warner Bros. Entertainment Inc. 55 DONATIONS: IN MEMORY OF 56 Michael McKenzie Ms. Sandy Felt Miss Kelley McKenzie Gisela M. Meridith Mr. Jerry R. Meridith Ellen Miller Ms. Elayne E. Gray Barbara A. Miller Mr. Ronald P. Miller Marjorie D. Mott Mott Charitable Trust Kevin J. Mueller Mrs. Faith Boock Mr. Tod Buenger Ms. Cheryl A. Hauber Ms. Geraldine Maday Mr. and Mrs. Tom Mantych Gerry and Linda Mueller Mr. Shawn M. Sullivan Mr. William Vance Erica Mueser Mr. Darryl L. Decker Mrs. Michelle L. Dupuis Mrs. Corinne Miller Linda R. Muniz-Azevedo Ms. Denise Mizzi Mr. Clayton Stouffer Marilyn J. Mutter Ms. Elizabeth Buck Mr. Glenn Clement Mrs. Kathleen Harrison Judith A. Nankin Mrs. Marisa McGrath Karma Nelsen Mr. Bruce J. Nelsen Melvin Newman Mrs. Shirley Newman William M. Nickels Ms. Barbara J. Nickels Karen Novak Evelyn and Robert Whitney Michael J. Nuzzi Ms. Barbara Akin T. Rowe Price Associates Foundation, Inc. Connie Oliver David and Kristen Rieth Joanne C. Olson Mark Baldwin and Carla Olson Ms. Carol Jeanette Volkmann Robert A. Osgood Mr. Philip Strauss Richard P. Page Mr. David S. Bliden Gary and Lesley Geisel Mr. and Mrs. Peter M. Sheils Mrs. Carolyn Sheils Kipp Palmer Ms. Cherie Rowe Sondra Pappas Mr. Leon Pappas Katie N. Parsons May Mr. William Anderson Ms. Katia Chiporukha Mrs. Gwendolyn Djupedal Episcopal Collegiate School Mrs. Cynthia Hofmann Mr. Kenny Maestas and Mrs. Kerri Lane Mr. Thomas K. McCarter, Jr. Mr. Mark Poe Mr. and Mrs. Ian Shelton Mrs. Carol Solomon Mrs. Laura Tevebaugh Mr. Olin Wage Ken and Mary Watts Mary and Richard Weden James Peck Mrs. Janice N. Peck Kimberly Peck Mrs. Janice N. Peck Pamela M. Peck Mrs. Janice N. Peck Sarah Peek Mr. Brian Bush Keith and Bonnie Corey Mrs. Mary Jones Dave and Michelle Peek Alethea J. Pergament Mr. and Mrs. Ron Crittenden Mrs. Lauren M. Farmer Mrs. Cynthia K. Hair Mill Creek Middle School Mr. Michael C. Morrissette Kurt and Susan Mueller Pinebrook Inc. PMA 207 Larry and Carol Pratt Mr. Richard Senkel Ms. Michelle Williams Mary Lee and Ed Witaconis Marilyn Petersen Mr. and Mrs. Jack Johnsonbaugh Ann O. Picchione Ms. Helen M. Baldwin Ms. Shirley E. Cummings Timothy and Denise Deschenes Dome Publishing Company, Inc. Ms. Rhonda Sideris Eugene F. Piscitelli George and Carol Chmielewski Ms. Antoinette A. Christopher Mrs. Jan Reese Kari Posekany Barry Boilson, MD Judith A. Retzloff Mr. Russell Bramblett Mrs. Julie Bryson Mrs. Leilani M. Davis Mr. and Mrs. Mike Locatelli Mr. Randal Way Booker T. Rice Mrs. Thelma S. Rice Donald J. Roscelli Ms. Jane L. Thomas Jason Rozakis Harry and Diane Rozakis Rajeane Rube Ms. Denise D. Aves Mrs. Myrlea K. Hoff Ms. Bonnie L. Larson Mrs. Jennifer Laube Ms. Evelyn L. Lohman James Rudd Cara and Fred Bitzer Ms. Judith A. Heims Mrs. Judy Ochs Mr. and Mrs. John Pallace Mrs. Ann J. Wojcik Dana Sadler Linda and E. J. Sadler Lynda O. Sawyers-Willis Ms. Barbara Bowling Ms. Lorie Debo Ms. Aileen D. Duff Sara Ann, Mary Susan & Ginni Keith and Anita King Ms. LaRue Kump Ms. Judith M. Paseur Mr. Frank E. Williams, Jr. Tiffany A. Scalone Andrew and Stella Aspromonte Margaret Scholes Mr. John D. Roe Susan Schoonvel Mr. John Schoonvel Kimberly A. Scott Mr. Steven C. Scott Barbara L. Scott Ms. Wilma L. Scott Kelly Seibert Minerals Technologies Dr. and Mrs. Mitchell Koppelman Murray Sender Camm and Sue Epstein Mary Jane Sheldahl Mr. Terry K. Sheldahl Richard Shepsko The Buckler Family Mr. John N. Cardwell Rabbi andy davitt Mr. and Mrs. Joseph Dudzinski Mr. Roland Faust Mr. and Mrs. E. Gordon Lash Mrs. Julie Lisowski Mary Liu, RN Richard and Mary Menkins Mr. and Mrs. Raymond T. Mock Ms. Helen Philipanics Ms. Maryann C. Popma Mrs. Wendolyn K. Saville Miss Linda Shaffer Mr. Sean Shepsko Mrs. Barbara A. Shepsko Mrs. Jean M. Stephenson Mrs. Sharon A. Strzelecki Mr. and Mrs. Alfred L. Tarlecki, Jr. Maureen and Bill Thorburn Mrs. Diane Valenti Ms. Rosemarie Zach Daniel M. Sheridan Ms. Jean Sheridan Ruth Shernoff Sherrie and Allan Turkheimer Herb Shernoff Sherrie and Allan Turkheimer Celeste H. Sherwood Mr. Ralph E. Burris Ms. Nellie Marie Delk John J. Siegmund Mr. and Mrs. Ollon E. Downing Joan Smith Ms. Gail Philbrook Carolyn D. Stallings Black Box Network Services Mr. and Mrs. Steve Despot Mr. Mike Downing Janice M. Frederick, MSN, RRT Mrs. Adwoa A. Frempong Ms. Joyce C. Green Mrs. Belinda Honablew Honeywell Tech Solutions Inc Ms. Teresa Jensen Mrs. Ann G. Little Ms. Linda L. Neadow Charles and Ruth Salvaggio Ms. Deborah A. Staab Mrs. S. Larie Taylor Mr. Vince Trim Ms. Susan Ware Xpose Fitness Amy C. Stamp Mrs. Sylvia Gaukel Atkinson Mrs. Nancy Franley Mrs. Karen Granger Mrs. C. Rebekah Henson Ms. Sharon R. Hofmeister Mrs. Barbara J. Kolkowski Ms. Cheryl Ralya Peterson Mr. Roy B. Pratt, Jr. Mrs. Kathryn A. Rapose Ms. Michele Verdi Patricia Stanchfield Robert F. Stanchfield, MD Stella Stavros Ms. Susan J. Miller Bonnie D. Steadman Mr. Robert W. Steadman Mary T. Steele Ms. Teresa M. Hoffman Joyce A. Stevens Mr. Vaughn M. Stevens Angelique Stubbs Mrs. Cheryl Eagy Melissa E. Suder Ms. Pamela E. Russell Laraine Tay Mr. James Tay Patricia H. Terry Mr. James K. Terry Arnold J. Timm Mr. and Mrs. Arnold H. Timm Peggy Toifel Mr. Ronald C. Toifel Joseph Tymczyszyn Mrs. Gwen H. Tymczyszyn Charles VanAllman Mr. Kenneth Anderson Ms. Meganne Atkins Mrs. Tracy Frankwick Mr. Tim Riley Moses Weintraub Mr. and Mrs. Norman Goldwasser Melissa Weymouth Mr. and Mrs. David J. Viscounty www.PHAssociation.org PATHLIGHT FALL 2011 Annette B. Whitney Miss Janice Weiser J. Wiernick Ms. Rose Wiernick Shirley L. Wilhite Mr. Raymond A. Wilhite Delaysia Williams Ms. Miroshala Allison Justin T. Willis Ms. Charleen McCormick Julian Willis Alice Abshier Mary and Douglas Drake Immaculate Heart of Mary Play Group Joseph Jeanette Mr. and Mrs. Richard W. Moore, Jr. Carol and Jerome Starling Ms. Mary T. Willis William A. Wilson Ms. Elizabeth Wilson Jerry, Matthew and Michael Wojciechowski Ms. Julie J. Agin Mr. Brett Andersen Mrs. Lisa Baba Mr. Gordon F. Baker Mr. Jerome Barr Mr. and Mrs. Kenneth Bartelli Mr. and Mrs. Edward W. Beckwith Mr. Joshua T. Belden Mr. Gary W. Belt Mrs. Terri R. Bengston Mrs. Dayna L. Bird Mr. and Mrs. Ron Blades Ms. Lesa Blades Body Awareness Physical Therapy Inc. Mrs. Pat Braun Mr. Austin Bullock Ms. Karen Burnette Mr. and Mrs. Michael Caffrey Mr. Christopher J. Carleson Camino Real Playhouse Mr. Ralph E. Carr Ms. Debbie Castro Mr. Daniel L. Cole Mr. Joe G. Crompton Mr. Joe G. Crompton Laura Hoyt D'Anna, DrPH Mrs. Clarice Delatorre Mr. and Mrs. Dennis C. D'Heilly Mr. and Mrs. Steven W. Dockins Ms. Donna Downs Mr. E. Kyle Drumwright Ecolab, Inc. Kari A. Ehringer, PharmD C. G. Elliott, MD Express Scripts, Inc. Fitness 19 Mrs. Missy Fleet Ms. Jennifer A. Garcia Mr. and Mrs. Scott Garland Mr. and Mrs. Brian F. Garland Mr. Simon Glickman Mr. and Mrs. Rodolfo Gonzalez Ms. Jody Green Ms. Megan A. Griffin Mr. and Mrs. Zachary M. Guajardo Mr. Gareth Gwyn Mrs. Kristin Harris Greg Havlena, MD Hennessey's Heritage Mr. Steven P. Honma Mrs. Michele Hood Ms. Elizabeth Jensen Mr. and Mrs. Anthony L. Johnson JRB Hairstyling Mr. Daniel Kelley Katie Kinninger, RCP Mr. Peter Koenig and Ms. Mary J. Koenig Kohl's Mr. Robert Kopeny Mr. William J. Kopeny Mrs. Carolyn R. Lane Ms. Maria Langarica Mrs. Connie Q. K. Le-Dang Mr. Jeffrey M. Niizawa Mr. Jack Nino Mrs. Carol Nix Marilyn I. Nolan, RN Ms. Diane E. Okada Mrs. Diana D. Olson Dr. and Mrs. Ronald J. Oudiz Mr. Robert E. Owen Palm Springs Air Conditioning & Refrigeration, Inc. David Pham, MD Mei P. Phan Ms. Kim M. Preston Ms. Valerie Proper Mrs. Armina L. Raymer Real Mex Restaurants Ms. Bette L. Reed Carolyn E. Ritchie, RN, BSN Julie A. Robin, R.N., CPNS Roman Cucina Mrs. Dianne Russell Ms. Ronelle Ryan R. Sabers Mrs. Shashi Sahgal Ms. Melinda Schissel Mr. and Mrs. Robert V. Schuller Ms. Tina Stanberry Ms. Joanne Stout Mrs. Jeane M. Szwarc Han N. Thai The William & Pamela Southern Tortilla Flats Restaurant Trabuco Hills High School Ms. Gloria Trump Mrs. Yolanda Trusdall United Therapeutics Corporation Mr. and Mrs. Steve Van Wormer Mr. Daniel Waddell Ms. Judy C. Walker Mr. and Mrs. Laurence M. Watson Waxie Sanitary Supply Mr. Robert F. Wilson Ms. Betty Lou Wojciechowski Mr. and Mrs. Mark Wojciechowski Mr. Adam Wolfson Zoological Society of San Diego Billie L. Wrigley Mr. Gary N. Hessel Mr. Frank Wrigley Brigitta Yancey Allan and Virginia Cornett Bernadine Young Mrs. Ellen S. Bawiec Mr. Geoffrey W. Young Susan J. Young David and Helaine Gottschalk Ms. Linda Renne Gabrielle Zaleznak Ms. Debra Blashfield In honor of DONATIONS LISTED WERE RECEIVED Between June 1, 2011, and August 31, 2011. Rachel Abraham Mr. Michael J. Abraham and Mrs. Judith E. Levin Mr. Steven H. Adler Mr. Michael Archer Ms. Vicki Bergstrom Mr. James Brunbaugh Mr. Kevin Collins Ms. Michelle DeAngelo Mr. Ronald Durbin Mr. Les Funtleyder Magdalen Gaynor, Esq. Mr. James Heuek Mr. Jack T. Ingram Mr. Jacques Intriere Bradford J. Jones, BSN Mr. John J. Kubik Mr. Rafael Labourdette Ms. Elizabeth Lakis Mr. Stuart Leblung Ms. Kathleen Lindenthal Mr. John E. Middleton Ms. Alison G. Modica Mr. John Parisio Mr. Michael Pollack Mr. Jay Pollak Ms. Susan Sanbury Mr. Roger Sirlin Mr. Trent J. Slate Mr. Anthony Tse Mr. Anthony Vecchione Stephen J. Abraham Dr. and Mrs. Mitchell Stein Stuart M. Berwick Ms. Kathleen Berwick Rapmaster Binky Mr. Johnny S. Simmons Nicole Blohm Ms. Dolores M. Saunders Wendy Bond Mr. Jonathan Segal Denise Bradby Tanya Bradby and Martin Slovacek Mrs. Emily M. Bradby Ruth Braun Mr. R. John Braun Emily Broadhurst Karen and Arthur Broadhurst Mr. Kevin Kondry John and Joyce Kondry Marta M. Brown Anne G. Isip and Frank Ritchie Mr. and Mrs. Jay McDowell Mrs. Marie H. Seliger Mr. and Mrs. Robert Webster Colleen Brunetti Mr. and Mrs. Timothy O'Connor Riley L. Buchanan Mr. and Mrs. Thomas Myers Charles D. Burger Sheryll & Carl Strang Fund Mrs. Karen R. Verlander Veronica Colsher William and Denise Colsher Ms. Maryann E. Hughes Catherine Doak Mr. Craig N. Finta Mrs. Susan S. Terry Sarah Donoughue Mr. and Mrs. Timothy M. Donoughue Beverly J. Early Ms. Dorothy J. Musil Danya Edwards Mr. Melvin A. Riegler Danielle Epstein Mr. David Tolchin and Ms. Shira E. Epstein Shira E. Epstein Shirley and Norman Epstein Serpil Erzurum Mr. Marc F. Hess Kimberly Farmer Mr. Jerry R. Meridith Jenna Fox Megan Burch, MD Judith K. Fox Mr. Scott A. Fox Priscilla C. Franz Ms. Karen Franz Camille Frede Mr. Harrison Frede Caroline R. Friedman Mr. Eric P. Friedman Patsy Gable Ms. Sharyn E. Fox Balraju Garlapati Mr. Raj Garlapati Branda Garnett Herschel and Charlene Conner Geal A. Goldbeck Mrs. Kim Mountjoy Mr. Daniel Tansey Mrs. Janey Tiesler Ryan Grann Daren and Kerry Grann Tim and Deb Shelton Emma Gray-Gonfalone Mrs. Dudley Gomila Mrs. Jan Hull Jodie Guerinot Mrs. Karen M. Burgholzer Emma Harrington Mr. and Mrs. Mark Harrington W. S. Hassan Mr. and Mrs. Wael Sammy Hassan Donald and Janet Hautzinger's 50th Anniversary Gary and Char Bush Mr. David C. Hallberg Burt and Ruthie Hallberg Elmer and Carolyn Hallberg Joseph and Martha Hautzinger Ms. Janet Hautzinger Ms. Naomi Kurek Barbara and Philip O'Brien Teresa and Timothy O'Brien Christina and Philip O'Brien Ms. Jeanette B. Rhinehart Sheila and Robert Shipherd Pat Silas Miss Leah C. Stamp Ms. Mindy White Gail B. Hayes Martha L. Tyler, RN, MSN Patricia L. Hernandez Elizabeth T. McNamee Memorial Fund, Inc. June L. Hiebing-Van Ryzin Pamela and Kim Beck June L. Hiebing-Van Ryzin and David R. Van Ryzin Erick and Michelle Thompsen Dee and Steve Van Ryzin Roz Holtzman Ms. Sharyn E. Fox Bonnie J. Hook Mr. Brian W. Hook John Houssock Mr. Guy Carpenter Terrence Jen Ms. Lilian H. Leung Anna Jeter Jack and Kathy Sheppard Harry and Shirley Winters Mary Kennedy Ms. Sharyn E. Fox Carol Khouri Mrs. Susan Rizkalla Heather Kirkland Ms. Norma Wren Roxanne L. Koerber Ms. Pamela R. McKay Melanie J. Kozak Mrs. Amanda M. DaSilva Drew D. Krajeck Ms. Mary A. Grabowsky Jason and Mariska Krajeck Katherine A. Kroner Mr. and Mrs. Edwin L. Simpson Lawrence/Berkowitz Family Ms. Susan J. Miller Sean Lehosky Mr. and Mrs. Michael Lehosky Cheyanne Lennard Mrs. Sheila Ratzlaff Kim Leslie Ms. Cheryl Leslie S. Levine Ms. Sharyn E. Fox Cynthia L. Link Mrs. Leila Korzeniowski PATHLIGHT FALL 2011 D O N A T I O N S : I N honor O F Mr. and Mrs. Daniel A. Leivas Mrs. Janet S. Lisle Ms. Andrea J. Lombardi Ms. Catalina Lomeli Ms. Danielle Lopez Lucas Oil Products Inc. Lucky Strike Lanes Mr. William Marshall Alfred and Bev Martini Mr. and Mrs. Bill G. McCamment Mr. Brian P. McCarville Medco Health Solutions, Inc Mrs. Christine Menasherov Mess Masters MetLife Mrs. Anita Y. Mitchem Mrs. Christina Morres Mr. Robert Munson Ms. Lauri Nelson Ms. Doan Thuc Nguyen, PharmD Carol Lore Ms. Nellie G. Morgan Boyd Losee Ms. Mary Losee Braxton Maddox Ms. Melissa Greenzweig Ms. Cynthia Henderson Mrs. Regina Maddox Annette S. Markin Mr. and Mrs. Thomas L. Polk Maria Martuccio Miss Christy Hill Ms. Lucia Martuccio Shari McClendon Brooke Burks, MS, ARNP Wes McConnel Debbie and Don Fontaine Robert McCully Mr. and Mrs. John A. Awood Sandra McEwen Lisa W. Wheeler, MT Lisa Mendez Mrs. Amy Lyn Miller Ida Monches Ms. Sharyn E. Fox Amy L. Mullican Mr. Jerry R. Meridith Shannon Munson Mrs. Patricia Swearingen Derrik D. Neal Cleal and Dexter Neal Emma R. Nelson Mrs. Diane V. Williams Rita Orth Judy and Don Anderson Judy Ostendorff Jim and Judy Caulkett Harold I. Palevsky Mr. and Mrs. Alan W. Mowery Aisha A. Parker Morris Mr. and Mrs. Alexander Morris Samantha Peskin Mr. Joseph N. Peskin Mary Jo Piatek Ms. Joanne Arfanis Mr. Louie Celli Mr. Daniel Egan Mr. Radu Fega Miss Corinna Maggi Ms. Valerie Mazzone Miss Liz Parenti Mr. Daniel Perez Ms. Nicole Piatek Ms. Jacqueline Sarlo Amy Piazza Potbelly Junction, Inc. BizCard Xpress Brad Cole Insurance Agency, Inc. Mrs. Lori Bosset Mrs. Monica L. Campbell Mrs. Nicole Kullgren Patient-to-Patient Support Line: 1-800-748-7274 57 D O N A T I O N S : I N honor O F Ms. Barbara Leszczynski Ms. Jill Morris Mrs. Rebecca Myrick Mrs. Jill Piazza Lois and Preston Piper Mrs. Janet J. Pruitt Mr. Stephen Quartarone Dr. Nicole Scheiman Mrs. Jennifer Sibley Mrs. Sam Snowden Mrs. Sam Snowden Mrs. Stephanie Winnek Cynthia Pickles Mr. Timothy C. Pickles Valerie E. Pierce Mrs. Gail J. Mastrototaro Scott Poitier Mr. Christopher Ogilvie Puerto Rico PH Patients Mrs. Carmen Lozada-Bruno Arthur Raney Mr. Darin E. Raney Ivan M. Robbins Mr. Jerry R. Meridith Olivia Rodrigues Dunking Donuts CustomInk.com Apple Food Services New Jersey Uno Restaurants, LLC Ms. Jane Adelman Mr. Ronald Adelman Mrs. Mary Ahern Mrs. Bernadette Alberta Ms. Lopa Amin Mrs. Kristen Andrade Mr. Fred Andrews Mr. Martin Baicker Mrs. Lana Ann Barquin Ms. Sherry Benigno Mrs. Regina Benitez Mr. Anthony Bianciella Ms. Karen Bryan Miss Katherine Bryan Ms. Sandra Jean Burgos Mrs. Michele Canzone Ms. Tracie Carrick Ms. Tammi Caruso Ms. Georgette Castner Mrs. Mary-Anne Conner Mrs. Jill Critelli Mrs. Judith L. Cutney Mrs. Amanda M. DaSilva Mrs. Maria Dominguez Ms. Danielle Doucette Mrs. Bernice Drozd Mrs. Joan Esposito Ms. Patricia Farrow Ms. Isabel Ferreira Ms. Donna Fichera Mrs. Dominique Fleishman Ms. Nadya Forgacz Mr. Lance Franco Mrs. Bonnie C. Freud Mrs. Jo Freud Mr. Doron Freud Mrs. Amy J. Gagner Mrs. Rosanne Garcia Mr. Henry Gertcher Mrs. Linda Giliberti Ms. Linda M. Glenn Ms. Jill Glenn Mr. Jose Goncalves Mrs. Arlene Gurnee Ms. Marilou Hahn Mrs. Michele Harrison Mr. Paul Hedli Mrs. Katherine Holubowich Ms. Rebecca Hudziak Bradford J. Jones, BSN Mr. Len Kamenetsky Ms. Cheryl A. Kenney Ms. Jane Kleiman Mr. Daniel M. Kovolisky Mr. Jan Kowalski Ms. Christina Lapatka Mrs. Maureen M. Lehr Mr. Paul G. Licameli Ms. Melodie L. Lisbona Mr. Jason Lisbona Mrs. Joyce Lisbona Mr. Jorge I. Lizardi Mrs. Elizabeth Lomauro Mrs. Angie Lyons Mrs. Jennifer Madamba Mrs. Robyn Maher Mrs. Karen Majoris Mrs. Cristina Malheiro Mrs. Patricia McLaughlin Mr. Philip Meyers Mr. Matthew E. Millheim Mr. George R. Mohlenhoff Mrs. Christina Morres Mrs. Helen O'Brien Mr. Hugh O'Kane Mr. John F. Ortman Mrs. Telma Pereira Mrs. Christine Riggio Mrs. Loretana Ripa Mr. Anthony Rivera Mrs. Claire M. Roarty Mrs. Valerie M. Roberts Mrs. Michelle Rodrigues Mrs. Deborah Root-White Ms. K. Rotella Mrs. Kristie C. Rougeux Mr. Normand Roy Ms. Liliana Santos Mr. Paulo Santos Mr. Jamie A. Savage Ms. Grace Schmidt Mrs. Jane Scholz Mrs. Jessica Segui Mrs. Filomena Sequeira Mr. Domingos Sequeira Miss Maria Sequeira Mrs. Lori Shannon Mr. Keith Sharack Ms. Kristen Sheekey Ms. Renee Sluszniak Ms. Mary A. Soderman Ms. Jeanine Sommers Ms. Dayra Soto Mrs. Nicole Spencer Ms. Angela Spoto Ms. Rebecca Stevenson Ms. Annie Stollmeyer Mr. Bernard L. Suchit Mrs. Kimberly Szalkai Ms. Kathryn C. Teel Ms. Cristina Teques Mrs. Pia Trivigno Mrs. Elizabeth Truslow Mr. Paul Tsai Ms. Joy Urdang Mrs. Marge Vallo Ms. Jeanmarie Visconti Ms. Ellen P. Walsh Richard Weiss, MD Mrs. Laura Wentz Mr. John White Ms. Amy Wiggins Mr. and Mrs. Bernard Yamakaitis Mrs. Trish Young Jenesis Rothblatt Ms. Susan J. Miller Rosa Lee Rothblatt Ms. Susan J. Miller Michael Ruotolo Mrs. Doreen Ruotolo My patients in Santa Barbara County Jeffrey S. Sager, MD, MSc Jean Schulz Mr. Roger E. Davignon Mr. Mark Dreiling Mr. Robert W. Frederick Mr. Robert Otto Galbavy Mr. Matthew J. Keith Ms. Amber McAllister Ms. Rebecca Perry Ms. Brenda K. Powell Ms. Kathy Striggow Mr. Daniel Thyfault Twana Schulz Mrs. Twana Schulz John R. Sperando Ignatius and Eleanor Iacono Mr. Emil C. Pagano Joanne and Kenneth Schmidt Joanne Sperando-Schmidt Ignatius and Eleanor Iacono Mr. Emil C. Pagano Alan and Rhoda Swartz's 55th Anniversary Mr. Philip Sternstein Kellie E. Tasto Mr. and Mrs. Joe Gilbertson Susan V. Temple Mr. Charles A. Vass Susan K. Tointon Mr. and Mrs. John A. Awood Zach Turkheimer Sherrie and Allan Turkheimer Ellen Van Loan Mrs. Lois Fossett Janett L. Verwey John and Janett Verwey Wendy Villars Randy and Karen Kraemer Stella Violet Ms. Dawn Butler Ms. Dianne K. Lancaster Cindy C. Wangerud Ms. Lillian Koranda Washington University Mr. and Mrs. Kevin Martin Hunter Wilhelm Ken and Carol Wilhelm David Williams Mr. Virgil R. Parrett Kathy Williams Mr. and Mrs. K. Anderson Ms. Genise M. Hasan Ms. Lynda Talve Ms. Sara Truitt Mrs. Gloria Wagman Gail Willner-Giwerc Mrs. Linda Wilner Deborah G. Wilson Mr. and Mrs. Jim P. Wilson Betty Lou Wojciechowski Lisa W. Wheeler, MT Lori Wylie Ms. Dora A. Reynolds Irvin J. Zipperstein Ms. Sharyn E. Fox Maureen K. Zuk Ms. Elizabeth A. Sweeney Lodewick Elise M. Zwicky Ms. Rita DeSollar general donations DONATIONS LISTED WERE RECEIVED Between June 1, 2011, and August 31, 2011. A Picture Life Photography Mrs. Ruth Aberasturi Accredo Therapeutics Inc. Actelion Pharmaceuticals US, Inc. Adams Golf Mrs. Peggy Adkisson Adventure Boot Camp Mrs. Danielle Aguirre Mr. Mike Alexander Ms. June E. Allen Mr. and Mrs. Gordon Amhaus Mrs. Anita Amira Mr. Robert T. Amirault Anaheim Ducks Anaheim Hills Pediatric Dental Practice Ms. Gidget Anaya Ms. Irene Anderson Mrs. Mary Anderson Miss Shelley Anderson 58 Ms. Vernay R. Anderson Mrs. Dawn Apio-Manoa Ms. Trixie Arcuragi Mrs. Gladys Arevalo Mrs. Mary L. Argus Mr. Gregory Armstrong Ms. Shirley Armstrong Mr. Marco Arnez Ms. Kimberly Arnold Mr. Lonnie Aschebrook Mrs. Marjorie Asuncion Mr. Gary S. Atkinson Mrs. Patricia J. Atkinson Mr. Ron Austin Mr. and Mrs. Ken Aylor Mrs. Betty Baer Mrs. Casey L. Bain Mrs. Joan M. Baker Ms. Mary Ellen Baker Ms. Serene Baker Ms. Paulanne Balch Ms. Angela K. Baldwin David and Sharron Baldwin Mr. Dimitrios Banousis Miss Jocelyn Barber Ms. Barbara Barkin Col. and Mrs. Benjamin H. Barnard Burton and Marion Barr Mrs. Maryanne Barranco-Byrne and Mr. Kevin T. Byrne Ms. Mary Bashford Mr. Douglas R. Bassil, Sr. Mrs. Margaret Bateridge Mrs. Barbara Sue Beard Mrs. Sonia Bejjani Ms. Susan Benjamin Mrs. JoMarie Bennett Mr. Jeff Benson Mr. and Mrs. Richard B. Berryman Mr. Frank A. Bersani, Sr. www.PHAssociation.org PATHLIGHT FALL 2011 Mr. Roland J. Berube Mr. John Besong Dr. and Mrs. Adam S. Betkowski, MD Mrs. Cordelia O. Beveridge Big Shotz Tavern Ms. Sherry Biggerstaff Ms. Barbara Billing Mr. Robert J. Blackburn Ms. Antoinette V. Blaine Mr. Brandon Blank Dr. Eva Blass Mrs. Zola M. Blay Mrs. Mary L. Blevins Mrs. Debra Bliss Ms. Everlena P. Blue Mrs. Diana Boatman Bob King Kia Bobcats Ms. Antoinette Boener Mr. and Mrs. Charles R. Bolch F. Cohen Mrs. Ardith Coleman Ms. Rosemary Coleman Columbia Presbyterian Medical Center Mr. and Mrs. David H. Combs Mrs. Denise Connor Mrs. Beverly J. Conte Mrs. Carolyn T. Cook Mr. Dan Coon Mrs. Jennifer Cooney Ms. Zulema Cordero Corky Carroll's Beach Adventure Costco Mr. Craig Courtney Mrs. Virginia A. Covelli Mr. Richard F. Cox Mrs. Cheryl Crabtree Ms. Lindsay Cram Mrs. Lindsay Cram Ms. Loene T. Cranford Mr. Kevin Crawford Mr. and Mrs. John Cregan Ms. Mary E. Cretaro Mrs. Holly Croll George and Lenore Crowe Mrs. Cornelia Crum CT Automatics , Inc. Mrs. Jen Cueva Mrs. Madlyn A. Cullen Ms. Sandra L. Culp Mrs. Janis S. Curry Customs Signs, Inc. Ms. Sherrie S. Cutler Ms. Isabell A. Cywilko Ms. Kathleen Czachor Mrs. Patricia Czyzio-Murphy D.C. Golf Ms. Margaret Daniels Mrs. Dana Darland Mr. and Mrs. Michael Dauwalder David W. Grooms Insurance Agency, Inc. Mrs. Claire Davila Mrs. Barbara Davis Mr. Clint Davis Ms. Nancy Davis Ms. Evelyn Daws Mrs. Sarah Day DBA Applebee's, Calabee's Inc. Mrs. Geraldine De Milt Ms. Joanne M. De Oliveira Dead and Buried Merchandising Mrs. Lily Dean Mrs. Katie DeDominicis Mr. Kevin Deeb Mr. Philip J. Deeb Tony and Gail Defrino Mrs. Teresa DeLisi Ms. Teresa A. Delorenzo Mrs. Marie E. DelRossi Mrs. Jayne Deppe Ms. Marcia E. DeSerres Mrs. Sarah Devlin Mr. Charly Diaz Dick's Sporting Goods Ms. Paula Dietz Mr. and Mrs. Mario DiLorenzo Mrs. Rosemarie DiNunzio Jeff and Ann Dodge Mrs. Alberta F. Dodson Mrs. Janetan F. Doherty Mr. and Mrs. John J. Doherty Mr. Jason Donow Mr. Quetzal Doty Ms. Brenda Dougherty Mr. and Mrs. William J. Douglas Ms. Donna Downs Ms. Kelly Doyle Dr Roxann Engle Ms. Mary T. Drake Mrs. Letitia Drees Mrs. Kimberly Drier Ms. Joanne Dunn Mrs. Anna Grace Durst Louise A. Durst, RN Mr. Charles E. Dyson Ear Abstracts, Etc. Mr. and Mrs. William C. Ebell Mrs. Robin Egger Mr. and Mrs. Frederick Ehemann Mr. Kurt Ehlert Mr. and Mrs. Saleh M. Eldam Mr. Tom Elich Mrs. Beverly Ellis Ms. Cynthia Empey Ms. Brooke Ensminger Camm and Sue Epstein Shirley and Norman Epstein Mr. Robert Erichson Mr. and Mrs. Robert Esasky Ms. Maria Del Rosario J. Espinoza Mrs. Maribeth Evens Excalibur Awards Express Scripts, Inc. F. Gavina & Sons, Inc. Karen A. Fagan, MD Mrs. Dana Falk Ms. Kathleen Falk Mrs. Evelyn Q. Farmer Ms. Jonelle Farrar Ms. Susan A. Fechtman Mrs. Dorothy A. Fecteau Mr. Ronald A. Federici Fedex Mrs. Toni Fedorchek Mr. Leon Feig Ms. Alexandra Fenner Ms. Katelyn Fenner Festival of Arts Pageant of the Masters Ms. Flora Finch Mrs. Sue-Ellen Finelt Ms. Christine J. Fini Finish Strong LLC Mrs. Maria H. Finnegan First n Flight Ms. Katie D. Fitzpatrick Fleishman Hillard Mrs. Velma Fletcher Ms. Kellie Foes Ms. Elissa Fohrman Mr. and Ms. John Ford Ms. Kimberlee Ford Kathy C. Forrest, MSW Mrs. Beth Forsyth FOVPL, City Hall Fox Sports West Mrs. Jan Fox Ms. Lucia Fox Ms. Sharyn E. Fox Mr. Glynn Frechette Mrs. Laurel A. Freed Mrs. Margaret Frericks Patty and Edward Freundl Mr. John Frie Mrs. Sherry Friedlander Ms. Annette Friedman Ms. Danielle Friedman Matthew and Barbara Frome Ms. Catherine Fugman Ms. Mame Fuhrman Mrs. Meredith Fulford Ms. Pam Fuller Mrs. Josephine Fulton Fun Services, Inc. Ms. Alexandra Gadbury Ms. Theresa Gallant Mrs. Ashley Gallegos Judge Barbara T. Gamer Ms. Nancy K. Gansburg Mr. and Mrs. R. Garnett Ms. Arline Garrell Mr. and Mrs. William Gates Ms. Shae Gawlak Mrs. Stella Geels-Ball Ms. Lisa Gehringer Gentiva Health Services Ms. Kathryn A. Gialanella Rena and Paul Giammona Giant Creative Strategy, LLC Michele and Douglas Gilbert Mr. Brian Gilbertson Mr. Marlin Gilbertson Mrs. Stella D. Gildemeister Gilead Sciences, Inc. Ms. LaVonne Gilliam Ms. Maureen Gillmeyer PATHLIGHT FALL 2011 Miss Indriani Ginoto Ms. Marlen Glathe-Gwerder Ms. Dorothy T. Glauser GlaxoSmithKline Glen Oaks Golf & Learning Center Ms. Mary R. Glover Mr. and Mrs. Dillard Godfrey Mr. and Mrs. Howard Goldberg Mrs. Judith Lael Goldman James and Judith Goldthwaite Ms. Sarah Gomez Ms. Martha Gonzales Ms. Lauren Gonzalez Mr. James Gootee Dr. and Mrs. Jonathan Gordon Mrs. Joyce Gore Mr. Ken Gotlib Mrs. Josephine M. Goulet Mr. David Grady Ms. Vivian L. Graham Mrs. Kathy Graham-Snyder Ms. Sheila Gray Green Mtn Coffee Roasters Ms. Cindy Green Mrs. Donna Green Ms. Janet Green Mrs. Lauren K. Gregory Mrs. Vonetta Grey Grubb & Ellis Thomas Linderman Graham Mrs. Barbara J. Guido Mrs. Anne Lane Guignard Ms. Rhonda Guilin Ms. Virginia Gumbs Miss Tiffany Gunderman Ms. Susan S. Gusz Gypsy Jewelry Mr. Clay J. Haberkorn Mrs. Erika E. Hall Portia G. Hall Mr. and Mrs. Frank J. Hall Mrs. Gloria Hamm Hands on Wellness Center Ms. JoAnn Hansen Mrs. Dee Hardison Ms. Elizabeth Hardwick Mrs. Patricia M. Harlan Harris Interactive Mrs. Ellen R. Harris Mrs. Susan Harris Mr. Ronald D. Harshman Ms. Barbara Harsted Ms. Renée Hart Mr. Curtis L. Hartman Mr. Tim Hasenour Mr. and Mrs. Wael Sammy Hassan Mr. Greg Hauenstein Mrs. Mary Lee Haugen Ms. Paula Hawkins Mr. and Mrs. Ronald Hayes Mr. Brian Haywood Ms. Lauren Healey Claudie and Frank Heard Ms. Patricia A. Heer Ms. Jennifer Heineman Ruth Ann and Gene Heineman Ms. Antonia M. Heininger Mrs. Marlene C. Heisley-Mitry Mrs. Betty Hendershot Mrs. Patricia Hendricks Mrs. Dawn Hendrickson Ms. Josephine Hendrix Mr. Daniel Henry Kevin and Lori Henson Mrs. Sue Herber Dr. Julie Herlihy Ms. Amanda Hernandez Mrs. Helen Hernandez Mrs. Lupe Hernandez Mr. Patrick J. Hernandez Mr. Bill Herrera Mr. and Mrs. George D. Herring Mr. Robert Hershey Ms. Leslie A. Hess Mr. and Mrs. John Hess Mr. Gary N. Hessel Ms. Julie K. Hetrick Patient-to-Patient Support Line: 1-800-748-7274 GENERAL DONATIONS Mrs. Lori Bolick Ms. Emma Bonanomi Mrs. Jennifer Boncich Mr. and Mrs. Jason Bond Dr. Andrew Bonin Mr. Henry Borten BounceU of Orange Ms. Ann Marie Bouvier Ms. Jamie Bowdish Miss Anna Bower Mrs. Janice C. Bowman Mr. Laurent Bracco Ms. Denise Bradby Mrs. Emily M. Bradby Bradford Renaissance Portraits Mr. Kevin Brant Mrs. Mary Brattich Brea Improv Ms. Vicki Brendefur Mr. David Brener Ms. Alice Bretz Ms. Christina Brewer Mr. Wilbur A. Briggs Ms. Fay Brinck Mr. Jeff Brinda Brock and Company Mrs. Sonia Brocko Mr. and Mrs. C.J. Brodbeck Broughton Hospitality Mr. Dan Brown Dr. Mary Beth Brown Mrs. Mary Ellen Brown Mrs. Myrville Brown Najeeba Brown Ms. Ruth Ann Bruzewski Maya and Gershon Buchsbaum Lori and Tim Bump Mr. and Mrs. Scott Burdick Mr. John Burgard Mrs. Violetta M. Burgess Mrs. Karen M. Burgholzer Mr. Kenneth R. Burkett Dr. and Mrs. Morris Burkwall, PhD Mrs. Shelia Burton Ms. Billie S. Bustle Ms. Laura Butcher John Hyslop and Carey Butlien Ms. Amanda Butts Ms. Judith Byrd Mrs. Christa Byrne Mrs. Diane Caldwell Callaway Vineyard & Winery Ms. Jessie M. Campbell Ms. Ora J. Campbell Priscilla and Robert Campbell Canyon City BBQ Canyon Pilates Mr. and Mrs. Ronald R. Canzano George and Catherine Carbin Caring Voice Coalition Mrs. Hewette Carlson Carolina Hurricanes Ms. Maria L. Carone Carrabba's Casa del Rey Mexican Restaurant Mrs. Pearl Casal George T. Case, Jr. Mrs. Nora Y. Case Mrs. Jeanie A. Celio Miss Judy Centeno Mrs. Loralee Center Mrs. Katherine Chan Chaparral Country Club Ms. Cathy Chapin Ms. Jean Chapman Mrs. Yvonne E. Chappell Mrs. Barbara Cheatham Mrs. Deanna Chelak Children's Museum at La Habra Arthur S. and Alice E. Childs Ms. Harriet L. Chorney Mrs. Brandy Christman Mr. David Chrysler Ms. Ann Cieslak Citrus College Mr. and Mrs. James H. Clasen Mr. Eric Clemente Clemmons Kitchen Mr. Marc S. Prizer and Mrs. Michele 59 GENERAL DONATIONS 60 Mr. and Mrs. Henry G. Heyman Mrs. Joyce Hill Mr. Kenneth E. Hintz Ms. Donna S. Hipwell Mrs. Cheryl A. Hlavaty Ms. Edna E. Hoefer Mrs. Melody Hofmann Mrs. Mary S. Holden Ms. Ruth Holland Ms. Noel Holly Ms. Carolyn Holmes Mr. James P. Homan Hometown Medical LLC Hooter's Ms. Helene M. Horn Mrs. Carol Horne Mrs. Megan Horton Ms. Rosemary House Mrs. Elizabeth K. Howard Ms. Kathleen Howe Ms. Nichol Howell Ms. Jennifer Hsieh Ms. Betty Ann Huebner Ms. Hazel Hughes Mr. Jay J. Huitsing Ms. Ursula J. Hummel Ms. Deborah Hunter Ms. Patsy L. Hunter Ms. Violet Hyde Ice House Comedy Club Mrs. Asako U. Igawa Ms. Jacqueline Imm Mr. Maurice Ingber Mrs. Patricia Inlow-Patterson In-N-Out Burger Ms. Heather Isaacson Ms. Mieko Ishigo Jackie King Ms. Anna E. Jackson Mr. Chip Jackson Mr. Jeff Jackson Mr. Stanley Z. Jacobson Ms. Jade Jaggers Ms. Dorothy W. James Miss Jennifer Janzer Ms. Jennifer M. Jarman Ms. Janice M. Jeter Ms. Laurie J. Johannsen Mrs. Debbie Johnson Mrs. Donna Johnson Ms. Ellen M. Johnson Ms. Emily E. Johnson Mrs. Joan Johnson Ms. Kara Johnson Mrs. Naomi Johnson Mrs. Sandra Johnson Mr. Tim Johnson Mrs. Bonnie L. Jones Mrs. Kathryn A. Jones Ms. Kay E. Jones Ms. Mary Anne C. Jones Mr. and Mrs. Larry Jones Mr. Terrence F. Jones Mrs. Agnes T. Jordan Mrs. Marianelle Jordan Mrs. Ruth Jordan Mr. Michael T. Joyner Juice Shop Ms. Louise F. Julian Ms. Sara Julian Mrs. Sherri A. Jusinski K1 Speed Mrs. Vicky Kaeser Mr. Donald Kaiser Mr. and Mrs. Zahi M. Kakish Ms. Dorothy P. Kassilke Ms. Emily Katz Mrs. Constance Keene Mr. Patrick J. Keilty Ms. Frances L. Kelley Ms. Jean Kelly Ms. Laura Kelly Mrs. Susan M. Kelly Mr. Jeffrey Kelso Mrs. Cynthia Kieu Ms. Jane Kimsey Mrs. Martha G. King Mrs. Heather Kirkland Mrs. Linda Kirkwood Mr. David Kistler Vicky and Clancy Kistler Kitty Cakes by Swirl Mrs. Denise Klaves Ms. Martha L. Klawiter Ms. Linda S. French and Dr. Sandra Knight Knoll Family Optometry Knott's Berry Farm Mrs. Mildred Knuckles Mr. Brent Koel Ms. LuAnne Koenig Ms. Jessie Kohler Miss Sumaya Kola Ms. Edna R. Kolhoss Ms. Madeline Koo Mrs. Deborah Kostelecky Mr. Duane Kostelecky Mrs. Melanie J. Kozak Ms. Chris Krajewski Mrs. Cynthia K. Kramer Ms. Deborah Kravik Ms. Eleanor Kreta Mrs. Jean Kroner Mrs. Donna M. Kuhen Ms. Michelle Kunkle Ms. Lisa Kunstadter L.A. Reynolds La Mirada Theatre for the Performing Arts Mrs. Mitzi A. LaBarge Ms. Judi Lafleur Ms. Kelsey Laird Mrs. Patricia Lalley Ms. Megan Lally Ms. Janis Lamar Anthony and Stacy Lammers Mr. and Mrs. Alan N. Langnas Mr. Al Lanseigne Mrs. Marcia Larsen Ms. Dolores Larson Mrs. Sharon A. Latham Mrs. Carol Sue Lawrence Thomas and Stephanie Layer Ms. Tia Lea Mrs. Alice Lee Dr. Alison Lee Mrs. Sandra K. Lee Ms. Susan J. Lee Ms. Donna Leeb Mr. and Mrs. Michael Lehosky Mr. and Mrs. Ronald C. Lemin Mr. Timothy J. Lenartz Mrs. Cleo Lenz Ms. Lucy Leonard Ms. Carole L. Leone Ms. Arlene Lespier Mr. McClellan Lester Mr. Jonathan Levin Mrs. Ann Levine Mr. Tim Lewis Ms. Sally T. Li Ms. Xiufeng Li Ms. Alison Liley Mrs. Barb Liley Miss Dana Liley Mrs. Sandra Liley Ms. Carol J. Lindstrom Mr. Jason Lindvall Little Kuts Mrs. Felicity S. Littlepage Mrs. Sharon Locke Ms. Gayle Lombardi Mrs. Cheryl A. Long Mrs. Michelle R. Long Ms. Joani Longbrake Ms. Lucia Lopez Los Angeles Dodgers Los Angeles Zoo Mr. and Mrs. Boyd Losee Mrs. Karen Lovingier Mr. Walter Lowinski Mrs. Dorene Lucero Mrs. Maribel Lugo LungRX Mrs. Anneliese Macdonald Ms. Rebekah Macfie Ms. Robin Machacz Ms. Sarah Mackey Ms. Mary Mackowski Ms. Stephanie J. MacLearn Ms. Roberta Macler Ms. Cindy MacNaul Mrs. Sally Maddox Ms. Maria D. Madrideo Ms. Liz A. Mahoney Arlene and Leo Maley Mr. John R. Maly Ms. Marie C. Maly Ms. Bonnie D. Mamer Mr. Perry Mamigonian Ms. Michelle Mangigian Ms. Judith Mangus Mr. and Mrs. James Manning Carl and Pat Manzo Maple Hill Investments DBA Sport Clips Mrs. Elizabeth Mars Mr. Cyrus J. Martin Mr. and Mrs. Joseph Martin Alfred and Bev Martini Ms. Joette Martuccio Ms. Lucia Martuccio Mr. and Mrs. Robert Marvel Mary Castle Memorial 22nd Annual Firecracker 5k Run Ms. Marcella Masiello Ms. Adrienne E. O. Mason Mrs. Gail J. Mastrototaro Mrs. Celia C. Matesich Maw and Paw's Grocery Mr. Dave Maxwell Mr. Patrick Mayerchak Mr. and Mrs. Wayne McCallion Mr. and Mrs. Duncan P. McCallum Ms. Michele McCavit Mrs. Shari McClendon Mrs. Catrina McClure Ms. Delores A. McCollum Mr. and Mrs. Steve McConnaughhay Mrs. Sharon McDaniel Mrs. Carol McDonald John and Kay McEnroe Mrs. Sharon McGarr Mr. Merlin L. McGee Michael and Bonnie McGoon Ms. Beverly McGregor Ms. Kathleen M. McIntosh Ms. Pamela R. McKay Mr. and Mrs. Matthew McKee Mr. Bryar McKlveen Ms. Victoria V. McMahon Ms. Marie McMullen Mrs. Birdie McNalley Ms. Paula L. Meadows Mr. and Mrs. Mike Mears Medco Health Solutions, Inc Medicus Life Brands Mike and Liz Mehaffy Miss Andree Michelle Meirless Ms. Barbara L. Melius Ms. Tammy Mennig Mrs. Kay Menu Mrs. Augusta Mexile Mr. Albert H. Meyer Mr. David E. Meyer Mr. Ben Meyerhoff Mrs. Jerrie L. Michaelson Mrs. Roseann Michel Ms. Amy Mikesell, B.S. Mr. and Mrs. John Miklos Ms. Connie Mikuski Ms. Betty Miller Mrs. Deborah Miller Mrs. Elizabeth A. Miller Ms. Jackie Miller Ms. Jody Miller Mr. Martin Miller Mrs. Patricia A. Miller Mr. Rich Miller MindWorks Multimedia, Inc. Ms. Toni Ann Minerva Ms. Debra E. Mitchell Mr. Homer Mitchell Ms. Marquerite A. Mitchell Ms. Mari Moffat Ms. Grace M. Momon Ms. Mercedes Moncion www.PHAssociation.org PATHLIGHT FALL 2011 Mr. David Montovani Mrs. Lisa S. Moreau Ms. Alice K. Morgan Ms. Nellie G. Morgan Mrs. Donna Mormur Mrs. Christina Morres Ms. Barbara Morris Mrs. Pamela Morris Mrs. Margaret E. Morrow Mortgage Crisis Remedies.com Mr. Thomas Morzello Mrs. Danielle Mount Mrs. Mary Ann Moy Mr. Troy Muckerheide Mr. Bill Muenkel Mr. and Mrs. William C. Mui Mrs. Glenda Muirhead Mr. and Mrs. James Mulhern Mr. Frank Murphy Ms. Marietta Murphy My Gym Yorba Linda Miss Ellen Myers Mrs. Melanie Myers Mr. Steve Nadolny Mrs. Juanita C. Nance Mrs. Julie Napoleon Nascar Hall of Fame Mrs. Beverly A. Natkiel Dr. J David Naumann Mrs. Beverly M. Nelson Mr. and Mrs. Chris Nelson Mrs. Judith Nelson Mrs. Karen Nelson Mr. and Mrs. Michael Nelson Mr. and Mrs. Robert A. Nelson Mr. and Mrs. Ralph W. Netzband Ms. Stacey Neumann Mr. Eloy Nevarez Mr. Russell Newman Mr. and Mrs. Richard G. Newton Mrs. Nicole Ng Fong Ms. Patricia Nicoloff Ms. Patricia E. Niemi Mr. and Mrs. Arthur Ninke Mrs. Carol Nix Mr. Robert L. Noddin Mrs. Jane Northrop Mr. Jacob Norton Ms. Andrea L. Nowicki Ms. Teresa A. Nyles Mr. Terry Odle Mrs. Bree O'Gara Mr. and Mrs. Brian O'Hara Miss Edna Irene Ohrbom Ms. Cindy Okeeffe Ms. Mehrzad Okhovat Old Salem Ms. Helen Ondry Ms. Regina O'Neal Mrs. Carol A. O'Neill Ontario Improv Mrs. Judy Ostendorff Ms. Letitia Otte Mrs. Yusetty G. Ovalle Mr. Kleda Owens Pacific Park Mrs. Ellen Pagnotta Mr. Charles A. Palmberg Mrs. Christine Palmisano Ms. Patricia G. Palone Panera Bread Mr. Robert J. Parchen Ms. Nancy M. Park Mr. Sheppard Parr Mrs. Eve M. Parsons Partylite Jade and John Passmore Pave Salon Ms. Jeanice D. Pearce Ms. Rita M. Pearl Ms. Brenda Pease Mr. gary J. pederson Ms. Sheila Peick Ms. Lisa Pendergast Ms. Gale L. Perkins Mrs. Geraldine W. Perry Mrs. Janice E. Persson Mrs. Roseann G. Peters Mr. and Mrs. Wayne A. Petrzilka Safeway Inc, US Corporate Ms. Kate Safron Ms. Bertha Saggerson Ms. Patricia O. Sampson Sam's Club - Club 6240 Mr. Jerry Samuels Tom Sander Mrs. Catherine M. Sandon Santa Ana Zoo Santa Anita Park Mr. Gerardo R. Santos Dr. Indu Sapra Mrs. Jeanette C. Sarazin Mrs. Carolyn Savala Mr. and Mrs. Robert D. Sayer Mrs. Julie Sayre Ms. Becky Schell Ms. Loretta Scheltens Mr. Gary Schildgen Mr. Fred Schilling Ms. Karen Schneider Ms. Cynthia D. Scholl Mr. Harry J. Schroeder Mrs. Mary Lou Schulte Ms. Cindy Schulz Scott Westmoreland Fine Art Ms. Cindy Scott Mrs. Joan Scott Ms. Myra Scott Mr. Steven C. Scott Ms. Belitha G. Sears Mrs. Ann Sebastian Ms. Victoria L. Selman Mrs. Kristine Semantel Ms. Mary A. Sexton Ms. Anne Shafer Mrs. Mariam Shah Mr. Saurin Shah Ms. Wanda C. Sharpe Deb and Tim Shelton Ms. Therese E. Sheridan Mr. Frank Shimkus Mrs. Tracie Shoe Mr. Saul Silber Mrs. Beverly Silveira Mr. and Mrs. Jerry C. Simmons Mr. Eric Simmons Mrs. Sheryl Simpson Dr. Diana Sims Mr. Richard M. Simses Ms. Joan Sipe Ms. Carol Skaug Skin Nirvana Slater's 50/50 Arlene and Wayne Small Mr. Kenneth Smith Col and Mrs. Billy F. Smith Mrs. Paulette C. Smith Mrs. Sharon Smith Ms. Melanie Snodell Mrs. Marcille Sohlberg Ms. Jessie M. Spalti Ms. Denise Sparacio Ms. Marjorie H. Spencer John and Antoinette Sperando Ms. Patricia K. Spiars Ms. Kathy Spinella Ms. Opal F. Spitzer Sprouts Farmers Market St. Paul Hotel Mrs. Nancy St. Pierre Mrs. Carolyn S. Staby Mr. Gary D. Stacy Dave and Traci Stahl Starbucks Coffee Company Mr. Robert Steele Mrs. Aggie Stefanelli Mr. Gary Stefczak Mrs. Catherine Stevens Mr. Vaughn M. Stevens Mrs. Joan M. Stevenson Mrs. Shanica Steward Mrs. Sheila Stewart Mr. Thomas D. Stipcak, Jr. Ms. Lynn L. Stokke Mr. Hansel Storey Mrs. Christi Stradley Mr. Glenn Strapp Ms. Shannin Strom-Henry Mrs. Mary Kay Studer Ms. Emelia J. Stullken Ms. Donnie R. Sullivan Sunshine Cleaning Solutions Inc. Ms. Barbara F. Suojanen Ms. Paula Supples Ms. Lynne Sutch Mrs. Rebecca L. Sutton Ms. Sara R. Sutton Ms. Carolyn M. Sweeney Ms. Sheila Sweeney Ms. Kelli Sweet Swiss Spine Clinic T. Phillips Mrs. Linda K. Taillefer Target Target - Store #677 Paul and Kellie Tasto Mrs. Mary Jo Taylor Ms. Barbara E. Tecklin Lawrence and Jean Teebken Lewis and Ruth Teeple Stephanie and Paul Terrell Mrs. Grace A. Terry The Grape Escape The Happy Tooth The Home Depot The Hull Team The Huntington Library, Art Collections and Botanical Garden The Label Company The Pasadena Playhouse Mr. and Mrs. Vernon Thiemann Mrs. Patricia C. Thill Mrs. Doris Thomas Mrs. Sharon A. R. Thomas Warren and Ellen Thompson John and Karen Thompson Ms. Marion Thompson Mr. Patrick Thompson Mrs. Margaret Thornburg Ms. Clara S. Thornton Ms. Nona Tiedge Mrs. Leona Tipp Mrs. Holly M. Tissue-Thompson Mrs. Astrid Tooms Mrs. Billie Ann Topping Ms. Pearl F. Torrey Toyota Speedway at Irwindale Trader Joe's Mrs. Kathleen J. Transue Dr. Linda Trautman Mrs. Suhwa L. Tsai Ms. Theresa Turken Mr. and Mrs. Melvin Turley Ms. Josephine Tuttle Mrs. Janice Tyler Ms. Carol B. Ungar United Therapeutics Corporation University Of Michigan Urban Oasis Dental Mrs. Laura Urmston Mrs. Joanne K. Utley Ms. Maria Valazzi Mr. Antonio Valles Ms. Mica Van Fossen Ms. Bertha N. Van Pelt Ms. Janet M. Van Swoll Ms. Lorun C. Vanskiver Ms. Joyce Vauaghn Mrs. Erica Vaughn Vermack Swim Team Ms. Mickie Vinson David and Mary Viscounty Mr. G. Von Berg Mrs. Christina Waldman Walgreens Ms. Libby S. Walter Mr. Ben Wankel Ms. Anita Ward Ms. Dona L. Warner Mr. and Mrs. William J. Wasserman Ms. Eula Mae Watkins Ms. Conchita C. Watson Mrs. Florence J. Waugh Ms. Shirley Weaver Ms. Suzanne M. Weaver Mrs. Jennifer Webb Mrs. Andrea Weeks PATHLIGHT FALL 2011 Mrs. Lorraine Weiland Ms. Maura Weiler Miss Janice Weiser Ms. Judith F. Wendler Ms. Lynda Wenk Western Asset Management Company Mrs. Margaret Whaley Mr. and Mrs. Daniel R. Wheeler Dr. Judy Whichard Mr. Steve Whichard Dr. Jim White and Ms. April Luehmann Mr. Roger C. White Ms. Claireann R. Whiteley Mr. John E. Whitman Mr. and Mrs. Vance J. Whitt Ms. Cynthia M. Whitten Whole Foods Market Mrs. Gloria G. Wier Ms. Jasmin Wiley Mrs. Serena Wiley Hunter Wilhelm Mr. Raymond A. Wilhite Mrs. Nina Wilkins Mr. Ron Willard Mrs. Anita Williams Mr. Mark A. Williams Ms. Teresa G. Williams Ms. Florence I. Williamson Ms. JoAnne Willis Mrs. Lara Willis Ms. Mary T. Willis Mr. Shane Willis Ms. Suanne Willis Mrs. Nancy C. Wilmer Wilshire Golf Club Mrs. Lara D. Wilson Mr. and Mrs. Preston Wilson Winery at Main Street Mrs. Georgia Winkler Ms. Sherry Wold Ms. Jennifer J. Wood Ms. Lois Woodard Ms. Marilyn M. Woodruff Mrs. Terri Woods Bill and Cynthia Wright John and Karen Wright Mrs. Marie Wright Ms. Carolyn Wyckoff Mr. and Mrs. Bernard Yamakaitis Yoga with Mollie Mrs. Margaret Yoniack Mrs. Doris O. Young Mr. Geoffrey W. Young Ms. Jenelle J. Young Ms. Liz Young Ms. Maxine K. Young Ms. Elnora Young-Williams Ms. Margaret Zellmer Ms. Damara Zepeda Mrs. Patricia Zerman Ms. Sandra Zimmerman Ms. Ruth Zinn Ms. Christina Zloza Mrs. Denise M. Zondervan Zoological Society of San Diego Mrs. Karan L. Zucal Mrs. Libby Zucker Patient-to-Patient Support Line: 1-800-748-7274 GENERAL DONATIONS Ms. Linda Philipcik Mrs. Emma Jane Philipp Mr. William G. Phillips Mrs. Amy Piazza Mr. and Mrs. John R. Pickles Helen and George Pifer Ms. Therese Pilonetti Mr. and Mrs. Preston Piper Mr. Paige Piper-Bach Mr. and Mrs. Allan J. Pipke Mrs. Twyla Pittsinger Ms. Tamara Pixler Plaza Produce Mrs. Sallie Plummer Plymouth Rock N Run Ms. Courtney Porstman Power Test Inc. Mrs. Moira M. Prakash Ms. Sonja Pressley Mrs. Coleen C. Pritchard Puddingstone Resort Mr. and Mrs. James H. Pugsley Ms. Esther Purpura Ms. Donna M. Pyle Clay Quinn and Deanna Quinn, RN Mrs. Mary Lou Quinn Mr. Mike Quirk Raleigh Running Outfitters Ralphs Rancho Cucamonga Quakes Mr. and Mrs. Donald Raschke Real Mex Restaurants Red Dragon Karate Ms. Cynthia Reed Ms. Penny Reed Mrs. Hiroko Reems-Webley Mr. Joseph Reger Mrs. Justine Reger Mr. Richard Reichley Mr. Rick Reichley Ms. Lenora Reifman Mr. John Reil Ms. Joanne Rella Mrs. Teresa D. Remaley Research Triangle Foundation of North Carolina Ms. Tiffany Rhine Mrs. Anne Rhome Ms. Constance Rice Mrs. Dee Rice Richard Nixon Foundation Ms. Mavis Richardson Mrs. Patricia M. Richardson Mrs. Suzanne Riefstahl Mr. Thomas P. Riggio Mrs. Rose Ritacca Ms. Roberta Rittenberg Mrs. Hilda M. Rivera Ms. Connie Roberts Mrs. Cynthia A. Roberts Mrs. Elizabeth Roberts Ms. Melissa Roberts Ms. Rosanne Roberts Mrs. Valerie M. Roberts Ms. Jane Robinson Mr. and Mrs. James Robinson Mrs. Kristy Robinson Mr. Alex Rohrer Mr. John Derek Rohrer Ms. Barbara F. Romney Ronald Reagan Presidential Library & Museum Mrs. Marie Ronan Ronnie's Restaurant Mrs. JoAnn Rose Mr. Robert R. Rosenbusch Ms. Nola Ross Mrs. Stacy Ross Mrs. Elizabeth M. Rossi Mrs. Stephanie Ruiz Mrs. Melanee Rushing Ms. Mary Russell Mr. Robert Russell Ms. Susan P. Russell Ms. Monica Rutten Ms. Leigh Scarlet Ryan Miss Tanya Saavedra Ms. Amy Sabatino Mr. Greg Saccomano 61 Legacy of Hope Society PHa’s legacy of hope society To honor those who have included PHA in their estate plans or whose legacies have been realized, PHA created the Legacy of Hope Society. PHA is pleased to recognize the following members. Sandra Alt Awood Dauna Leigh Bauer* Sylvia Marie Becherer* Gloria G. Blodgett* Dorothy E. Bradley Roberta F. Browning* and Lee Broadbent Rita and Bruce Brundage Jane P.* and Harold P. Cooper James F. Corbett* Laura Hoyt D’Anna, DrPH Charles W. DeVier, III* Linda M. Feibel* Barbara Gamer Tammy* and Dean Hazen Mary and Carl Hicks Jacquelyn Holt Richard L. Horrocks Terri L. Kopp* Gloria Lang* Thomas and Mary Jo Linnen Sally Maddox Bonnie and Michael McGoon Joseph W. Mihuc* Karen Moody Marjorie D. Mott* Joyce L. Mowrer* Dorothy and Harry Olson Rita and Guy Orth Pat and Jerry Paton John and Cynthia Pickles Carol Posner and Marc Priore Frances A. Price Louise and Gene Salvucci Judy and Ed Simpson Marcia and Jack Stibbs Helena Strauch* Frank A. Tobac* Torres-Gonzalez Family Deborah and Roger Towle Carol B. Ungar Daniel R. Walsh* Andrea and Stephen White Are We Missing You? Please update my mailing list information as follows: (Please print.) q Mr. q Mrs. q Ms q Dr. q Miss Name: ___________________________________________ Business (if any): __________________________________ Address: __________________________________________ City: _____________________________________________ State: __________________ Zip: _____________________ q Please check here if this is an address change. Phone: ___________________________________________ Fax: ______________________________________________ E-mail: ___________________________________________ I am a: q Patient q Caregiver q Parent of child with PH q Medical professional (title and affiliation): ______ _______________________________________________ Mail or fax completed form to: Pulmonary Hypertension Association 801 Roeder Road, Ste. 1000 Silver Spring, MD 20910 Fax: 301-565-3994 *deceased members For more information on PHA’s legacy planning program, call Jennifer at 301-565-3004 x756, email Giving@ PHAssociation.org or visit www.PHAssociation.org/Give. You may also submit a change of address online at www.PHAssociation.org/ContactUs PHA Staff Rino Aldrighetti President [email protected] Adrienne Dern Senior Vice President [email protected] Candice Abate Vice President, Medical Services & Patient Education [email protected] Margaret Beardsworth Insurance Program Manager [email protected] Emma Bonanomi Health Education Specialist [email protected] Dorothy Bradley Office Assistant Amanda Butts Director, Office of the President [email protected] Debbie Castro Director of Volunteer Services [email protected] Chanda Causer Patient Outreach and Services Manager [email protected] Micaela Cohen Associate Director of Medical Services [email protected] Tracey Delaney Office Assistant [email protected] Kimberly Demirhan Meetings Planning Associate [email protected] Sylvia Earley Communications & Development Coordinator [email protected] Haley Elmers Executive Program Associate [email protected] Meghan Finney Patient Education Manager [email protected] Caitlin Flewellen Online Education Associate [email protected] Suzanne Flood Marketing & Communications Manager [email protected] Kathryn Frix Online Community Liaison [email protected] Alisa Goldman Ellie Falaris Ganelin Rebecca Kurikeshu Bob Gray Doreen Lucadamo Design & Publications Associate [email protected] Director of Development [email protected] Diane Greenhalgh Director of Web Services [email protected] April Grimsley Administrative Assistant [email protected] Carsten Hailey Meetings Planning Associate [email protected] Patty Hunt Associate Director of Finance & HR [email protected] Jennifer Kaminski Development Manager [email protected] Sophie Klein Volunteer Services Associate [email protected] Arsène Koissy Database Manager [email protected] Katie Kroner Director of Advocacy and Awareness [email protected] Allied Health Program Associate [email protected] 62 www.PHAssociation.org PATHLIGHT FALL 2011 Medical Outreach Program Associate [email protected] Director of Meetings & Conference Planning [email protected] Leslie Mahaney Special Events Associate [email protected] Megan Mallory Associate Director, Publications Pathlight Editor [email protected] Jessica McKearin Associate Director, Special Events [email protected] Michal Rachlin Kerry Bardorf Family Support Program Associate [email protected] Jessica Ritter Office Operations and IT Manager [email protected] Meghan Tammaro International Services Manager [email protected] Keisha Thomas Associate Director, Database [email protected] Elisabeth Williams Grassroots Campaigns Associate [email protected] Contact PHA Phone301-565-3004 FAX301-565-3994 [email protected] Envelope of Hope (Free Packet for New Patients) Chanda Causer Member Services and Address Changes Jennifer Kaminski New Member Packets, Pins, Brochures and Cards Support Groups Debbie Castro x777, [email protected] x756, [email protected] x0, [email protected] x755, [email protected] PHA Resources and Services Pathlight and Persistent Voices Submissions -------------------The Winter issue deadline is November 4, 2011. Pathlight is your publication. Tell us about your support group, recent event, phenomenal PHer or anything else you’d like Patient-to-Patient Support Line (daytime, please)1-800-748-7274 Children with PH/PPH Laurie Jeter, [email protected] Organization Liaisons National Institutes of Health: Heart, Lung, and Blood Institute Rino Aldrighetti, [email protected] American Thoracic Society: Public Advisory Roundtable Rino Aldrighetti, [email protected] Patient-to-Patient Support Line Coordinator Pat Paton, [email protected] I n s u r a n c e R e s o u r c e s Accredo’s Hotline for Flolan 1-866-9FLOLAN for Veletri 1-866-344-4874 for Remodulin 1-888-485-8350 for Tracleer 1-877-483-6828 for Ventavis 1-877-483-6828 Caring Voice Coalition 1-888-267-1440 Curascript Helpline 1-866-4PH-TEAM CVS Caremark Helpline 1-877-242-2738 (Remodulin, Tracleer and Flolan) GlaxoSmithKline Patient Assistant Programs www.gskforyou.com Letairis1-866-664-LEAP NeedyMedswww.needymeds.org Partnership for Prescription Assistance 1-888-477-2669 www.pparx.com Priority Healthcare Remodulin Hotline 1-877-462-6225 Tracleer Access Program 1-866-228-3546 to share. Let us know how you cope with PH, how you live and work every day. We’ll accept articles, quotes, photos, tributes, etc. for consideration in the newsletter. We also accept submissions of personal PH stories, pictures, poems and quotes for publication in the next issue of Persistent Voices. If you’re not comfortable writing your story — or if you just can’t find the time — contact us and we’ll interview you about it and write it for you. If you are interested in reporting for Pathlight or conducting interviews with other members of the community, let us know. Please contact us with your input and stories! Send submissions, with your phone number, to: “Newsletter Submission” or Print Services Department Pulmonary Hypertension Association 801 Roeder Road, Ste. 1000 Silver Spring, MD 20910 “Newsletter Submission” [email protected] Work submitted will be printed as space permits. Please let us know if you would like anything returned. PHA cannot be held responsible for any materials lost. Board of Trustees Scientific Leadership Council Pathlight & Persistent Voices Laura D’Anna, DrPH, Chair Vallerie V. McLaughlin, MD, Chair-Elect Sally Maddox, Secretary Roger Towle, Treasurer Carl Hicks, Immediate Past Chair Vallerie V. McLaughlin, MD, Chair Richard Channick, MD, Chair-Elect Todd Bull, MD Charles Burger, MD Murali Chakinala, MD Serpil Erzurum, MD Karen A. Fagan, MD Robert Frantz, MD Nicholas S. Hill, MD Marc Humbert, MD Dunbar Ivy, MD Zhi-Cheng Jing, MD Anne M. Keogh, MD Dinesh Khanna, MD Michael Mathier, MD Michael D. McGoon, MD Ronald Oudiz, MD Myung Park, MD Andy Peacock, MD Tomas Pulido, MD Erika Berman Rosenzweig, MD Virginia Steen, MD Duncan Stewart, MD Darren Taichman, MD Victor F. Tapson, MD Jason Yuan, MD Roham T. Zamanian, MD Megan Mallory, Editor Charles Burger, MD, Medical Editor Michael D. McGoon, MD, Medical Editor Karen A. Fagan, MD, Medical Editor Camille Frede, Youth PHenomenal Youth Editor Nancy Frede, Parent PHenomenal Youth Editor Amanda Martin, Volunteer Copyeditor Edward Freundl, Volunteer Copyeditor Jodi Palmer, Volunteer Copyeditor Trustees-at-Large Robyn J. Barst, MD Colleen Brunetti Linda Carr Richard Channick, MD, SLC Representative Louise Durst, RN, PH Professional Network Representative C. Gregory Elliott, MD John Hess Dunbar Ivy, MD Mark Jeter Tony Lahnston Michael D. McGoon, MD Rita Orth, RN Cindy Pickles, RN Diane Ramirez Harry R. Rozakis Traci Stewart, RN, PH Professional Network Representative Jack Stibbs Steve Van Wormer Rev. Stephen White, PhD Liaisons Louise Durst, RN, Chair, PH Professional Network Harry Rozakis, Patient Liaison Distinguished Advisors David B. Badesch, MD Robyn J. Barst, MD Bruce H. Brundage, MD C. Gregory Elliott, MD P AT H LIG H T ROUN D TABLE PHA thanks the Pathlight Roundtable volunteers for their guidance and contributions to this issue of Pathlight. Shirley Craig, General Review Robert Tash, Volunteer Services Raye Bohn, Advocacy and Awareness Jessica Lazar, PA, Medical Services Emeritus Dorothy Olson Harry Olson Jerry Paton Pat Paton, RN Edwin Simpson Judith Simpson, RN, EDS Ex Officio PATHLIGHT FALL 2011 Rino Aldrighetti Patient-to-Patient Support Line: 1-800-748-7274 63 356 York, PA 801 Roeder Road, Ste. 1000 Silver Spring, MD 20910 Web www.PHAssociation.org www.PHAOnlineUniv.org E-mail [email protected] Phone 301-565-3004 Patient-to-Patient Support Line 1-800-748-7274 (daytime please) Pathlight Receive a $10 Discount on MedicAlert Emergency Response Services T he PHA community now receives a special $10 discount off MedicAlert Advantage membership. The MedicAlert Advantage Program allows patients to create and manage emergency medical information with a personalized medical identifier and 24/7 emergency response service. PH patients 18 and older who mention PHA’s discount code, 5962, will receive the discount on their first year of Advantage membership. (Patients below the age of 18 are eligible to subscribe to the KidSmart program, which is available at a reduced fee without this code.) Learn more about medical identifiers for PH on PHA’s website, at www.PHAssociation.org/MedicAlert PHA Debuts NEW Survival Guide PHA is proud to debut the updated and redesigned 4th Edition of Pulmonary Hypertension: A Patient’s Survival Guide, PHA’s comprehensive resource for patients and caregivers! The new 4th Edition features five revised chapters, including: • • • • • Diagnosis PH drugs Surgical treatments Children, teens and family planning Insurance and legal matters The book also has a new chapter written just for PH caregivers. You can purchase your new copy now at the PHA Store! The book is $15 for PHA members and $25 for non-members. Visit www.PHAssociation.org/ OrderSurvivalGuide or call PHA at 301-565-3004 to order your copy.