From Pathlight, Fall 2011 - Pulmonary Hypertension Association

Transcription

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
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.
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
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
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
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.
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
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
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).
14
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
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
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!
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
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
20
international
news
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.
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
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.”
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
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
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
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
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
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
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.
29
ADVANCING THE CAUSE
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
• 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
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
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
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
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.
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
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
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
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
40
www.PHAssociation.org
PERSISTENT VOICES FALL 2011
Mack and his wife Mary
Persistent Voices
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.)
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
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.
43
COMMUNITY CLASSROOM
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
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.
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
Building Medical Education in PH
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
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.
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
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
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
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
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 
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
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
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
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
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 
John M. McCullough
Mrs. Donna M. McCullough
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 
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
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
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
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
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
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
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
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
Mr. and Mrs. Mark
Wojciechowski
Mr. Adam Wolfson
Zoological Society of San Diego
Billie L. Wrigley
Mr. Frank Wrigley
Brigitta Yancey
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
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
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
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
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 Mendez
Mrs. Amy Lyn Miller
Ida Monches
Ms. Sharyn E. Fox
Amy L. Mullican
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
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
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. 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
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
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
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.
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
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
Ms. Julie K. Hetrick
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
Mr. David Montovani
Mrs. Lisa S. Moreau
Ms. Alice K. Morgan
Ms. Nellie G. Morgan
Mrs. Donna Mormur
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
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
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
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
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]
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
“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
63
356
York, PA
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.

From Pathlight, Fall 2011 - Pulmonary Hypertension Association

Transcription

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