lupus news - Lupus Foundation of Minnesota
Transcription
lupus news - Lupus Foundation of Minnesota
SUMMER/FALL 2014 A PUBLICATION FOR FRIENDS AND SUPPORTERS OF THE LUPUS FOUNDATION OF MINNESOTA lupus news in this issue Meet Mara, LFM Volunteer P.2 Latest Lupus Research P.4 Summer Fellowships P.6 BOARD OF DIRECTORS Scott Brown, MBA, CPA Chair Be a Perennial Participant with LFM P.8 Jason Price, MBT, CPA Treasurer Renee Sayles Secretary Shreyasee Amin, MD David Barnes, MBA, CPA Dale Allen Berry, CP Ginger Sorvari Bucklin, MBA Lynn Clarey Erick Johnson, MBA Robert Kratzke, MD Michael McGuire Chris McPartland, MBA Mark J. Padgett, JD Pat Pauls, CPA STAFF Jennifer Monroe, MA, MPH President Sara Otto Vice President Sandy Parnell, MSW Director of Education Robert Hybben Communications Coordinator Jerad Rasmussen Finance Meet LFM’s 2014 Lupus Ambassador With 24 years as a support group leader behind her, Jan Jundt continues to defy the odds through family and humor By Mercedes Pitzer, contributor This year’s Lupus Ambassador is one of the longest serving volunteers in the Lupus Foundation of Minnesota’s (LFM) history – Jan Jundt. For 24 years, Jan facilitated a support group with her husband, Dave, in Bismarck, North Dakota, and more recently has been a regular participant at the Lupus Walk for Hope and 5K Run - Twin Cities. Jan was first diagnosed with lupus on Dec. 14, 1989. She was admitted into the hospital and was given just 24 hours to live because each of her internal organs, except her heart and brain, were failing. For those 10 days, she does not remember a single thing and explains that she “left (her body) for a while.” During this time, she heard a voice say, “You have much left to do yet, Jan.” When she awoke, it was Christmas Eve. Her family was relieved, and Jan said with good humor, “There’s no way you’re getting rid of me that easy; I’m not done yet!” Since then, Jan has had many flares landing her back in the hospital – two of which were life- threatening. Between 2010 and 2011, she was hospitalized every month with the exception of two. She has had both of her hips replaced, as well as her wrist, and major back fusion surgery. Currently, she is dealing with Charcot Foot. After all is said and done, Dave jokes that Jan is like a cat with nine lives and she has used up three already. Her family refers to her many trips to the hospital by ambulance as Jan’s chariot ride. “It sounds better; less depressing,” Jan said. As for everyday challenges, Jan explains that fatigue and joint pain are her biggest ones. Just like her theme song “Tubthumping (I Get Knocked Down)” by Chumbawamba, she may have days where she is knocked down by lupus, but no matter what, Jan is sure to get back up and keep on going. Together, Jan and Dave have three daughters: Tressa (35), Kelli (31), and Amy (30). They are a very close family and each member does their part in helping out Jan whenever it may be needed. To them, it is not that Jan has lupus, but rather they all do. They prefer to live by the mantra “we have SEE “AMBASSADOR,” CONTINUED ON PAGE 3 Supportive Services Meet Mara Q&A with an LFM support group volunteer giving back, and still receiving The Lupus Foundation of Minnesota recently asked Mara Locketz of Minneapolis to answer some questions about living with lupus and her reasons for getting involved with the organization. Here she tells about her inspiration, incorporating her job into her volunteer work and how she’s posed to help with a new support group. Q: What is your occupation? A: Psychotherapist and full-time doctoral student in Counseling Psychology. information about lupus. As a mental health therapist, I was able to recognize that I wasn’t coping well with my diagnosis emotionally and I needed some extra support. Perhaps one of the best things I did for myself Mara Locketz during that time was calling the phone number of a group facilitator – Debra Turner. Talking to someone else who was living with lupus and could tell me not just about the long-term effects of the disease, but also dispel some of the fears I was having about the quality of life I should expect for myself, was lifesaving. Q: Tell us about your immediate family. A: Unfortunately, it is just my brother Garrett and I now. Our mom passed away from colon cancer in 2002 and my father recently lost his battle with depression. It hasn’t been easy, but I’m lucky that my brother and I are close and able to lean on each other for support. Q: Why did you choose to get involved with LFM? He just completed his third year of medical school, so it’s been nice A: I chose to become involved because I wanted to give back to the to have an additional person to go to with my questions about lupus. community that had already given so much to me. I knew that I wanted to be a “Deb Turner” for others who were newly diagnosed Q: What inspires you? or struggling. Having a background in counseling psychology and A: What truly inspires me personally and professionally is the notion group work made me a good candidate to facilitate a support group of human resiliency and the belief that we as individuals are all so and I jumped at the chance to do so. much more capable of handling adversity and challenges than we know. Maintaining that understanding makes my work as a therapist Q: What is your volunteer role with LFM? fun because I see my role as being more about helping clients to A: Group facilitator and general volunteer, having recorded my discover and use the strengths they already have instead of trying to lupus story for Cory Cove’s 24-Hour On-Air Marathon and being in “fix” people. line for speaking opportunities. Q: When were you diagnosed with Q: What do your feel you offer in this “What truly inspires me personally lupus? volunteer role? and professionally is the notion of A: A year ago this month! What a A: My training in mental health, and difference 12 short months make. I felt human resiliency and the belief that particularly my research in health completely helpless and scared when I psychology, allows me an educated we as individuals are all so much was first diagnosed, but throughout the perspective on the emotional aspects of more capable of handling adversity past year I’ve done a lot to educate dealing with chronic/life-threatening myself about the disease, gain emotional diseases. At the end of a day, though, I’m and challenges than we know.” support from others, and to become really just a person who’s living with more physically healthy. I was also very lupus and wants to help. I understand the —Mara Locketz fortunate to find a great team of physical and emotional symptoms physicians (i.e., internist, rheumatologist because I’ve dealt with them myself. And and dermatologist) who have helped me to manage my symptoms. despite all of the crap that comes with this disease, I have also experienced an immense amount of personal growth and new Q: How did you first learn about the Lupus Foundation of meaning in my life that I hope to inspire others to find in their own Minnesota? journeys. A: Shortly after I was diagnosed, I came across the Lupus SEE “MEET MARA,” CONTINUED ON PAGE 3 Foundation of Minnesota’s website while looking online for 2 Supportive Services “Ambassador” continued from page 1 lupus.” It is a promise and a constant reminder that they are all in it together. “Medicine and family are the only reasons I’m here,” Jan said, “along with my mom and dad, they are my biggest support group.” word out. I think with 25 years of experience of living with lupus, I can maybe help a little.” During her time as the Lupus Ambassador, Jan hopes to learn from others, meet new people, and listen to other’s stories about what they have gone through throughout the years. She also wants to share her story in order to let others know that they are not alone. “There are others going through the very same thing,” Jan said, “probably in different ways, but they are still dealing with the same thing and they need to know that.” By standing at her side and turning the bad into positive energy through humor, Jan’s Ambassador Jan Jundt with husband Dave family has really helped in the sense of keeping her spirits up and giving her five good reasons to In the big picture, Jan says she is blessed that she has lupus. “It has live – her grandchildren. taught me so much – especially to not take life for granted, because you don’t know what is going to happen a minute from now. So, After years of giving to the community, regardless of her own always be sure to tell people that you love them.” personal battle with lupus, Jan’s daughters wanted to give something back to her by recommending their mother for the 2014 To learn more about Jan, be sure to check out LFM’s blog at Lupus Ambassador position. Together, they wrote a detailed letter LupusMN.org, where she will be imparting her wisdom, as both explaining why their mother would be a good “face” for lupus and someone with the disease and as a long-time support group leader. LFM. Before they knew it, Jan was receiving a call saying that she She will be covering topics such as her personal experience with was chosen as 2014 Ambassador! lupus, raising awareness, and volunteering. Upon hearing the news, Jan was thrilled. “I was really honored,” Jan said, “you always want to be able to help others and get the And if you would like to meet her in person, make sure to come see her at the 2014 Walk/5K events this fall. She and Dave plan to be in the Twin Cities, Rochester, and Duluth. “Meet Mara” continued from page 2 Q: In your opinion, what role do support groups play in the life of a lupus patient? A: Living with lupus inevitably brings a multitude of emotional and physical considerations into one’s life that is often difficult for nonsufferers to understand and/or sympathize with. In addition to dealing with feelings of anger, sadness, and anxiety about what the future will bring, lupus patients also have to deal with unique situations, such as navigating the healthcare system, communicating with doctors and family members, recognizing the signs of a flare, and considerations for safe enjoyment of the sun. Support groups offer a safe, nonjudgmental environment to discuss these issues and so many more with others who really “get it.” It can also be a place not just to commiserate, but also to share experiences of hope and resilience. Q: What is the biggest challenge of lupus for you? A: Since it’s summer, all of my other symptoms take a backseat (in terms of importance) to my painful skin rashes from the sun. I swear I should buy stock in Coolibar because I own so much of their UPF clothing! I have always been an active, “outdoorsy” person and as a result, I’ve done my best to figure out ways to still do what I love while staying protected. Last fall, while wearing about a pound of sunscreen, a protective hat, and sun-resistant clothing, I was able to complete a 15-mile hike through Glacier National Park. That felt amazing. Q: What’s the best part of volunteering with LFM? A: Being able to give back to a community that has given so much to me. If you would like to volunteer with LFM, visit LupusMN.org and complete a volunteer application under “Get Involved.” To find a support group in your area, see the “Services” page of the website. 3 Research Innovative collaboration finds new possibilities in existing treatments The Alliance for Lupus Research (ALR) announced last fall that it will be working on a cooperative project with the Lupus Research Institute (LRI) to identify new treatments for lupus. In the past 50 years, there has only been one new FDA-approved drug for lupus; while there are a number in the pipeline (see article at right), the need for new and effective treatment options continues to grow in urgency. With a focus on accelerating these efforts, ALR and LRI have committed to work together on a novel approach. According to the ALR website, “there are approximately 70 existing therapies that have been approved for other conditions – multiple sclerosis, rheumatoid arthritis, transplant rejection or cancer – that potentially could be used to treat lupus.” ALR and LRI will analyze and prioritize each potential lupus therapy based on “mechanism of action, safety profile, availability, feasibility to carry out a trial in lupus, and likelihood to succeed.” Then, a panel of experts will review the collection and choose about 20 therapies for further research. Recently, ALR and LRI joined with the National Institutes of Health (NIH) to launch the Accelerating Medicines Partnership (AMP), which will help “speed new paths to treatment for lupus and autoimmune diseases.” This $230 million collaboration will use collective knowledge from various companies, Potential new medications in development bring hope for the future From new drugs to cutting-edge genetic research, the dynamic growth in clinical efforts to understand and treat lupus is encouraging. More than a dozen drugs are currently in the clinical trial pipeline. The chart below describes the process and highlights where these lupus-specific drugs are in development. Follow the progress of these drugs through the Food and Drug Administration (FDA) approval process by visiting the National Institutes of Health at ClinicalTrials.gov and the Center for Information and Study on Clinical Research Participation at ciscrp.org. PHASE AND PURPOSE PHASE I: To assess the safety and tolerability of the drug and identify any physiological effects and what the body does with the drug. Small groups (20 - 50) of healthy volunteers. DRUG TYPE OF LUPUS TARGETED* AMG 811 SLE, LN ABT-199 SLE AMG 557 SLE CDP7657 SLE Eculizumab SLE PHASE II: To assess how well a drug works while continuing the safety assessments of Phase I. Larger groups (20 - 300), generally the first stage where patients are included in clinical trials. Often divided into Phases IIA and IIB. PHASE IIA: To find the correct dosage of a drug. PHASE IIB: To determine efficacy. Designed as a randomized trial where a select number of participants receive the drug and others receive a placebo, both with standard of care. PHASE III: To assess definitively how effective the drug is in comparison to the “Gold Standard” treatment. A successful Phase III is required for FDA approval. Larger patient group (300 - 3,000) at multiple locations and often quite long in duration. PHASE IV: Following FDA approval, these studies assess the long-term safety and efficacy of a drug in patients. Designed to detect any rare or long-term effects, continuously studying the safety of the drug Laquinimod SLE, LN Sirukumab LN, CL Rontalizumab SLE Sifalimumab SLE Rigerimod SLE Epratuzumab SLE Tabalumab SLE Atacicept SLE, LN Blisibimod SLE Abatacept SLE, LN Benlysta SLE SEE “COLLABORATION,” CONTINUED ON PAGE 8 * CL = Cutaneous Lupus | LN = Lupus Nephritis | SLE = Systemic Lupus Erythematosus 4 Research Effort aims to help improve treatments in African-Americans LFM funding plays role in University of Minnesota research on biomarkers By Emily Gillespie, Ph.D., University of Minnesota Researchers who seek new biomarkers for human diseases have many goals. In the case of researchers of systemic lupus erythematosus (SLE), they are searching for biomarkers that could make the disease easier to diagnose, improve management of disease activity, predict when a flare is likely to occur, and help physicians decide which medications to use (or avoid) in a particular patient. And thanks to advances in genomic and proteomic technologies over the last 10 years, they have been successful in identifying many such candidate biomarkers. Many previous studies of biomarkers in lupus patients have focused on those of European descent. However, African-Americans are disproportionately affected with SLE. Not only is the incidence of SLE in African-American women higher than in Caucasian women, but African-Americans also tend to have more severe disease than white patients. It is critical to gain a better understanding of the biology that leads to the increased severity of lupus in AfricanAmerican women, so that we may have a chance to improve patient care and reveal new targets for therapy. “These biomarkers will help point towards new therapeutic targets that may be particularly effective in African-Americans.” —Emily Gillespie In 2011, the Gillespie Lab at the University of Minnesota submitted a request for $30,000 to the Lupus Foundation of Minnesota (LFM) to utilize current lupus clinic bio-repository samples to evaluate why African-Americans are disproportionately affected by SLE, with the goal of improving clinical tools and treatments. Specifically, the project was aimed at detecting patterns of gene expression in the blood that could be biomarkers for SLE in African-Americans. gene expression patterns in patients followed over time, so that they could test whether the expression patterns changed as patients experienced flares of their lupus. The researchers identified one gene whose expression levels increased significantly as African-American patients transitioned from inactive disease into a lupus flare; this gene did not change in expression in Caucasian patients who experienced a flare. In addition, they found four genes, representing three different expression signatures, that exhibited significant changes in their expression levels in African-Americans during transitions from active disease into remission. Expression levels for these genes did not change significantly in Caucasian patients who transitioned from active disease to remission. Emily Gillespie, Ph.D. Through initial funding from LFM for this study and its subsequent findings, the lab established the foundation to work on uncovering additional biological clues to help understand the increased susceptibility to – and severity of – SLE in African-American patients. Ultimately, the ongoing study will provide a foundation for improving clinical management support for lupus patients and these biomarkers will help point toward new therapeutic targets that may be particularly effective in African-Americans. Emily Gillespie, Ph.D., is an assistant professor in the Department of Medicine at the University of Minnesota. For more information about research currently being conducted in the Gillespie Lab, visit sites.google.com/a/umn.edu/gillespielab/ As a result of their efforts, the team discovered several gene expression patterns that appeared to be unique to AfricanAmericans with lupus, as well as patterns that are found in both African-American and Caucasian patients. They next studied these 5 Research Fellowship helped to inspire new generation of researchers For many college students, summer break means part-time jobs and weekends at the beach. But for a select few, chosen as Student Research Fellows by the Lupus Foundation of Minnesota (LFM), it means logging long hours behind a microscope helping to find a cure for lupus. As part of his fellowship, Miozzo helped investigators examine the role of the lupusassociated protein, LypW, in response to the Every year, LFM awards a small number of student summer research lymphocutic fellowships to promising undergraduates. Designed to encourage a choriomeningitis virus. new generation of medical researchers, the fellowships enable students to work with established investigators – including those at “Working in Dr. the University of Minnesota and Mayo Clinic – on efforts to improve Peterson’s lab with the diagnoses and develop new treatments. Fellows report the results of support of the LFM their research at a public presentation at the end of the summer. fellowship has opened many opportunities for Since its creation in 1981, the program has funded more than 120 me,” he noted. “I not only fellows, many of whom cite the importance of the experience to their learned many technologies eventual career paths. Adam Langenfeld, a fellow from 2005 who used in the research lab, worked with Dr. Tim Behrens, currently attends the joint M.D./Ph.D. program at the University of Illinois College of “I shadowed Dr. Erik Peterson in the clinic Medicine at Urbana-Champaign. and saw how systemic lupus erythematosus Adam Langenfeld 2005 Student Summer Fellow Currently in the M.D./Ph.D. program at the University of Illinois but I also developed an understanding of the fundamentals of immunology.” Now, as he prepares to begin his senior year, Miozzo is working in a medical laboratory at Yale researching endogenous retroviruses and immunity and is planning to apply to medical school in the fall. impacts individuals’ day-to-day lives.” “Participating in summer research was one of the reasons I pursued a dual-degree program —Pietro Miozzo following my undergraduate studies,” Langenfeld recently said. “My excellent experience Both Langenfeld and Miozzo look working in a lab with other students and researchers on potentially back fondly on their times as fellows. “I can’t even begin to describe medically relevant projects excited me about the possibilities of how beneficial the summer fellowship was to my future career as a conducting ‘bench-to-bedside’ research.” scientist. I learned so many new protocols that I can While serving as a fellow, he helped investigators at the University of add to my list, as well as Minnesota to analyze a molecule known as neopterine, a potential just how a lab works in biomarker for lupus. “It’s a molecule produced when macrophages general,” Miozzo said. “I are activated during inflammation,” Langenfeld explained. “We got to see just how found potential correlations between other markers for immune collaborative everyone was activity and neopterine in patient samples.” within and between labs.” Pietro Miozzo, a student at Yale University, was similarly influenced by his experiences as a fellow in 2012. “Before the fellowship, I did not know much about lupus,” he noted. “On the first day of my fellowship, I shadowed Dr. Erik Peterson in the clinic and saw how systemic lupus erythematosus impacts individuals’ day-to-day lives. Subsequently, I learned more about the condition, how individuals experience it, and what organizations like LFM can do to support them.” 6 “It was an excellent experience that I would recommend to anyone looking to learn about conducting research in an academic setting,” added Langenfeld. Pietro Miozzo 2012 Student Summer Fellow Currently at Yale University Research LFM awards student research fellowships for summer 2014 Students will be working at the University of Minnesota and Mayo Clinic under the direction of established medical researchers University of Minnesota Mayo Clinic Lillian Nosow (Smith College) Dr. Emily Gillespie Londyn Robinson (University of Minnesota) Dr. Daniel Mueller Jenna Ruggiero (University of Minnesota) Dr. Brian Fife Samuel Albanesi (Allegheny College) Dr. Timothy Niewold Mitra Maz (Washington University) Dr. Timothy Niewold Prakriti Shrestha (Grinnell College) Dr. Timothy Niewold 2014 fellows will present the results of their summer research at Nygaard Lecture Hall at the Mayo Clinic on July 31 from 11 a.m. to 12:30 p.m. and at the University of Minnesota’s McGuire Translational Research Facility on August 25 from 1 to 2:30 p.m. Presentations are open to the public. See LupusMN.org for details. Just a gut feeling: LFM-funded research seeks causes of SLE The Lupus Foundation of Minnesota (LFM) funded its first student fellow in 1981 and its first clinical research project in 1995. In total, over 180 individual researchers have been supported by LFM in clinical efforts to improve treatments for lupus, and to find a cure. In awarding grants to clinical researchers, the foundation looks to support creative ideas and promising innovations to provide the initial funding required to gather more evidence, and the preliminary outcomes required, to pursue new approaches in lupus research. Sometimes this involves taking a chance, or going out on a limb, and sometimes, it’s just a gut feeling. While a number of studies have, and are, making great progress in identifying a number of genes associated with systemic lupus erythematosus (SLE) they have not been able to completely solve the pathogenesis of the disease. This year, LFM funded just such a request from researcher Patrick Gaffney, M.D., of the Oklahoma Medical Research Found- ation for a pilot study entitled “Intestinal Microflora and Systemic Lupus Erythematosus.” Gaffney’s study proposed examining the gut microbiomes (or the community of microorganisms that live in the stomach and intestines) of patients with lupus to ascertain if there are variations between those with lupus and those with a healthy immune system. It is understood that microbes living in a person’s intestines can directly affect how the immune system works. These microbes can also, in fact, hold clues to the origins of autoimmune disease via their role in initiating or moderating autoimmunity. Recent studies show that the immune system can be regulated in a positive or negative manner merely by the type and population structure of these organisms. According to Gaffney, “Autoimmune diseases, including lupus, multiple sclerosis, rheumatoid arthritis and Sjögren’s syndrome, are conditions in which the immune system becomes overactive, and instead of attacking foreign invaders, turns against the body. In other words, the diseases have a genetic component – a combination of mutations in the DNA that ‘prime the pump’ for disease – but they also require an environmental trigger.” In short, Gaffney’s pilot project will attempt to figure out if the trigger that sets off lupus might be hiding in the gut. By looking at the difference in gut bacteria between those with lupus and those with healthy immune systems, Gaffney hopes to have a better understanding of how SLE is caused, and perhaps identify a methodology by which it can be controlled. Evidence could lead to discovering an intervention treatment such as those that have successfully been developed to change the microbiome in patients suffering from the bacterial infection clostridium difficile to stop the disease before it starts or lessen its impact for those with lupus. More information on Gaffney, his research and recent publications can be found at: omrf.org/ research-faculty/scientists/gaffney-patrick-m/ 7 Education Be a perennial participant with LFM By Larry Norgren, contributor we found a cure – yet. I see many different physicians One morning, during a recent downpour, I thought of the time and take a lot of when I wanted to plant a strawberry garden. I did all the work of medication. I first heard building a raised bed, and I filled it to the top with rich, black soil. about Benlysta, for When I purchased the plants, I wanted ones that would come up example, from LFM’s year after year, so naturally I chose annuals. A year later, no plants newsletter, and I did came up. I was mad and returned to the garden center to complain. I research and found more was told if I wanted plants that came up every year, I was supposed information about it. On to purchase perennials, not annuals. Oops! my next visit to my rheumatologist, I discussed Larry Norgren What does this have to do with the Lupus Foundation of Minnesota it with her and now I get it (LFM)? The word perennial is Latin and means “throughout the through infusion once a month. That’s just one example of what I year.” Throughout the year, LFM provides opportunities for learning have received from efforts by LFM to improve my health and and for meeting others with lupus. lifestyle. I have participated in many of these The best thing I’ve gotten from opportunities, such as classes on attending these classes, seminars and “I encourage you to become an fatigue management and low-impact luncheons is the associations I get with LFM perennial, too. . . to participate exercises to improve flexibility and others who have lupus. I have never ‘throughout the year.’” decrease pain. The webinars and met a person with lupus that I didn’t workshops were just outstanding, like, nor have I had more respect for because if I wanted more information —Larry Norgren the courage they show by living their or clarification, I was able to ask the lives the best they can. They have jobs, presenter. Every class I have taken raise families and do activities, all the was well taught, and I came away with new ideas and information time dealing with lupus. Those of you with lupus, you truly are for living with lupus. heroes! I have had lupus since I was five years old (though I was not officially diagnosed until I was in my 40s). Since then, I have had many health battles and two life-threatening episodes. We haven’t found a reason why some people get this terrible disease, nor have Help us help you The Lupus Foundation of Minnesota needs your feedback! Please take a moment to complete a confidential survey that will help us evaluate what we are doing well and how we might improve our services in the future for those affected by lupus. Find the survey link on the front page of our website: LupusMN.org 8 I encourage you to become an LFM perennial, too – not to be a strawberry plant but to participate in its programs “throughout the year.” Try attending an event or seminar. You will be doing yourself a favor. Trust me, it’s not so bad to be a perennial. “Collaboration” continued from page 4 organizations and communities to achieve its goal. The AMP program is necessary because it will help assess which pathway and target show the most promise for developing new therapeutics. investing in early-stage, high-risk ideas, we have supported innovation in fundamental understanding of the disease and successfully identified a diverse range of new pathways and targets in lupus,” said Margaret Dowd, President and CEO of LRI. To find out more about these projects or the “We are very pleased to see the NIH participating organizations, please visit build upon the foundation that the alr.org and lupusresearchinstitute.org lupus research organizations have accomplished over the past decade. By Our Donors Special thanks to our many generous donors May 1, 2013 to April 30, 2014 $5,000 + Beverly Calmenson Fortress Financial Group, LLC PLUS Foundation T. C. and L. M. 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