Meet The MSA Coalition Board of Directors
Together We Can
The Multiple System Atrophy Coalition is governed by a dedicated all-volunteer Board of Directors. The Board is comprised of MSA patients, current and former care partners as well as family members of MSA patients, healthcare professionals, research scientists and business professionals. Together, their unique skill sets form a strong team that is making significant progress in the fight against MSA. Learn more about our board members below!
Pam Bower - Chair
“When my mother-in-law, Ida Richard (1943-1998), was diagnosed in the mid-1990’s there was very little information available to our family. One shining light in the darkness and despair was the Shy-Drager MSA Support Group (now the MSA Coalition) which offered an online support group established by Vanderbilt University staff in 1995. After joining that and similiar groups, my informal education in neurodegenerative diseases began. I soon discovered many other families in need of the same information I was seeking and I was so happy to share. I became the leader of the online support group in 2000 and found, much to my surprise, that connecting families to one another, sharing reputable resources, and reaching out to medical experts to help answer patient and family’s questions was something I was uniquely suited for. In honor and memory of so many families I have learned from and been touched by, I’m so proud to bring my nearly 20 years of advocacy experience to the MSA Coalition as a member of the board.”
In 2010, Pam created the website MSAawareness.org (now archived) to highlight the best sources of information on the disease from around the world. In 2014, Pam was instrumental in pushing for the introduction of House Resolution 518 to US Congress supporting federal recognition of Multiple System Atrophy Awareness month. Pam served as co-chair of the Advocacy working group at the Global MSA Research Roadmap meeting and is author of the article Multiple system atrophy: Building a global community – 30 years of advocacy efforts.
Pam served as Secretary on the board from 2014 to 2021 and was elected Vice Chair in 2022. She stepped into her role as Chair of the Board in January of 2023. She has also led the Research Committee as chair through seven research grant cycles since 2013, organizing and administering grant reviews and awards, liaising with medical and scientific advisors and connecting with donors and fundraisers. As of 2022 over 50 projects with $3.5 Million in MSA Research has been funded. Pam maintains an active presence on social media, sharing information and keeping up to date on the latest MSA research news. Her key goals are to encourage worldwide collaboration among the MSA community, promote more awareness, encourage fundraising and support researchers to find a cure.
Pam was recognized by the global MSA community with the JP Schouppe “JiePie” Award for excellence in MSA advocacy in 2012. She has been nominated four times for the WeGo Health Activist Awards, and was named WeGo Health’s “Best in Show – Facebook” in 2015.
Professionally, Pam is currently a Senior Consultant for an IT service company and has worked for clients in the Telecommunications, Life and Health Insurance and Utility sectors. After earning a Bachelor of Science degree in Computer Science from the University of New Brunswick (Fredericton, NB), she attended the graduate business program at Dalhousie University (Halifax, NS). In 1988 she began her IT career with Maritime Life Assurance Company (Halifax, NS), a subsidiary of John Hancock (Boston, MA). While there she earned the insurance company management designation Fellow, Life Management Institute (FLMI) from LOMA (Atlanta, GA). Pam joined the Board of Directors in 2013.
Cynthia Roemer, EdD - Immediate Past Chair
“Multiple system atrophy entered our lives years before Mom was diagnosed as seemingly unrelated symptoms pervasively advanced. Once diagnosed, we searched for information, hungry for answers. The Shy-Drager Support Group, now The MSA Coalition, was essentially the only MSA specific resource available. Our family still felt largely alone on this path having never met another patient, let alone anyone who even heard of this disease. But with the MSA Coalition’s growth, through its services and resources there is no need for any family to feel isolated again. I am always amazed by the strength and spirit among members of our community, though I witnessed it first-hand with my mother. Mom handled this disease with such dignity and grace. She maintained her sense of humor and zest for life despite this diagnosis. Her will to fight and love for her family remained intact until her last breath. Her spirit lives on in our family’s commitment to continue this fight. If I can make a difference for others traveling down this path, then my mother’s suffering will not have been in vain. Mom helped people all her life. I have no doubt she is leading me now to continue her legacy.”
Cyndi was primary care partner to her mother, Dolores, who was diagnosed with MSA in 2004. Dolores remained at home throughout her illness and lost her battle to MSA on Mother’s Day in 2009. Wanting to help others on this journey after their own experience, her family founded MSA NJ, a registered 501(c)(3), to support those in the tri-state area impacted by MSA. Cyndi served as the first chair of the organization. One of its earliest activities was to connect with the MSA Coalition and assist in hosting the 2012 annual conference in New Jersey, which was one of the largest to date at that time. Since then, Cyndi has continued to facilitate MSA support groups in the area and is an active MSA advocate. Cyndi participated in the MSA Global Roadmap meeting in 2014 and served on the advocacy working group. In 2016, she was an invited speaker at the Cure PSP East Coast Family Conference. Appointed to the MSA Coalition Board in 2014, her focus has been to expand education and patient support and to increase awareness initiatives in an effort to bring MSA needs to the global forefront. She served as Chair of the Board from 2017-2022 and transitioned to Immediate Past Chair in 2023. She also serves as chair of the Education and Conference Committee. She was instrumental in arranging for the MSA Coalition to both present and host a poster session at the 6th International MSA Congress in New York City in 2018, the first time the organization has done so, and in connection to this meeting, she organized the first Global MSA Advocacy meeting.
Cyndi completed her doctoral degree at Columbia University. She is a senior professor of mathematics at Union College and an invited part-time lecturer at Rutgers University. During her tenure at the College, she served as department chair, coordinated various programs, planned numerous events, has been a proponent of service-learning, founded the College’s Student Volunteer Organization, and frequently presents at both the College as well as regional and national professional association conferences. She has been recognized in a variety of venues, having been nominated for the Instructional Technology Council 2017 Award for Excellence in eLearning, and previously for the Campus Compact Thomas Ehrlich Civically Engaged Faculty Award. She is the recipient of the National Institute for Staff and Development Organizational Development Excellence Award in Teaching in 2013, the Union County College Neblett Prize for Educational Excellence in Teaching & Learning in 2008, and the Union County Commission on the Status of Women “2003 Woman of Excellence” in Education, in addition to a number of other academic recognitions. In 2021, Cyndi was recognized and interviewed for her leadership by Global Genes: Allies in Rare Disease. Read the interview here.
Cynthia is close with her siblings, Kym and Ron, and is mommy to multiple fur babies, enjoying the unconditional love and loyalty of her dogs.
Dawn Rodgers-Dexter - Treasurer
Dawn’s journey with MSA began when her father-in-law, Richard Dexter, began to experience balance difficulties and falls from orthostatic hypotension in early 2015. After many visits to specialists in Memphis, TN, Dawn, and her wife worked with his primary care physician to secure an appointment at Mayo Clinic-Scottsdale, AZ. After several days at Mayo, it was determined that Richard was experiencing symptoms related to a possible MSA diagnosis. Unfamiliar with the disease, the family sought a second opinion from a movement specialist at UAB where the possible MSA diagnosis was confirmed.
“Upon receiving Pop’s diagnosis, Jana and I immediately began to research and advocate for his treatment and overall well-being. It is when we found The MSA Coalition that we were able to find guidance on how to manage his symptoms and give him the greatest enjoyment of life possible. It was also through The MSA Coalition’s Patient and Family Conferences that we met other families having a similar experience and lifelong friendships were formed. We are grateful we found The MSA Coalition very early on in our journey.
A Midsouth native born and raised in Tennessee, Dawn attended Christian Brothers University in Memphis where she participated as a member of the Division II Women’s Softball Team and graduated with a Bachelor of Science degree in Business Administration. Dawn earned an Executive Certificate in Financial Planning from Christian Brothers University, Certified Trust & Fiduciary Advisor designation from the Institute of Certified Bankers, and Certified Wealth Strategist® designation from the Cannon Financial Institute. Dawn is a Vice President and Fiduciary Strategist at Comerica Bank & Trust, N.A.
A passionate sports enthusiast, Dawn enjoys spending time outdoors with her wife, Jana, and two beloved English Labrador Retrievers, Adler and Lucia.
Patricia Libby Thvedt - Secretary
“My husband Joel was diagnosed in 2015 with probable MSA-C following a year of unusual symptoms including sleep disturbances and gait and balance problems. We were lucky that we live in Los Angeles and were referred early to the movement disorders specialists at UCLA who diagnosed Joel more quickly than many MSA patients. We immediately decided to do two things: (1) gather as much information as we could about MSA, and (2) travel as much as possible with our three sons and spend time with extended family. Through our research, we discovered the MSA Coalition, and it has been a lifesaver for our family throughout our MSA journey. It is difficult for patients and families to navigate a rare disease like MSA, and the MSA Coalition provided us with invaluable information and support. We attended the annual conference in San Francisco 2018, and learned so much about living with MSA and about the latest medical research. We also met other patients and families who knew exactly what we were going through, and those friendships have provided a wonderful support system ever since. My husband battled MSA with grace and dignity, and a wonderful sense of humor, until his death in February 2020. As a way of honoring my husband’s remarkable attitude, I want to share my knowledge and experience as his care partner to help support patients and care partners facing MSA. I am also passionate about using my professional background as an attorney to advocate for increased awareness of MSA and for better access to healthcare and other services for those in the MSA community.”
Patricia Libby Thvedt lives in the Los Angeles community of Altadena, California and is an adjunct professor at the University of Southern California Gould School of Law and a legal writing coach in Los Angeles. She met her husband Joel in 1984 when they were fellow students at UCLA Law School and, following graduation, Patricia practiced general civil litigation for nearly twenty years. During Joel’s illness, Patricia and Joel, together with their three sons now in their mid-twenties, traveled extensively both within and outside of the United States. For many decades, Patricia has enjoyed serving as a board member of numerous school and community organizations in the Pasadena area. She has a B.A. in Political Science from Stanford University and a J.D. from UCLA School of Law. Patricia served on The MSA Coalition’s General Advisory Council in 2020 and joined the Board in 2021. She began the role of secretary to the board in 2022.
Elizabeth’s mother, Eileen Dyas, started to experience Parkinsonism-like symptoms in Fall 2013. Over the next few years, her symptoms were erratic and the response to Parkinson’s treatments poor. The probable MSA diagnosis came in the summer of July 2017; sadly, Eileen passed away in October 2017 at the age of 68.
“As a result of the late diagnosis, we (unfortunately) found out about the MSA Coalition and all of its resources late in our journey with MSA. The 2018 conference helped us connect with others in the community, further understand the disease, and provided us with needed closure. With its focused mission to support patients and families, educate the medical community, advocate on behalf of MSA patients, and support global research funding and brain donation, the MSA Coalition is doing important work to find a treatment and cure for this rare and terrible disease. I’m proud to be on the board and to help others on their journey with MSA.”
Born and raised in New Jersey, Liz moved to The Netherlands in 2011. She holds an MBA from The Rotterdam School of Management in The Netherlands, and a Bachelor of Science in Marketing from The Pennsylvania State University. She currently works in marketing for Slimmer AI, an AI B2B venture studio based in Amsterdam, The Netherlands. Liz joined the MSA Coalition General Advisory Committee in January 2019, and the Board in June 2021.
Liz lives north of Amsterdam in a small, picturesque fishing town with her partner and toddler son. When not working or participating in MSA Coalition business, she enjoys reading, biking, traveling, and practicing Dutch.
Larry Kellerman, PhD
“The roles of husband and care partner began to blend into one as each year passed without the diagnosis both my wife Colleen and I wanted. As the fifth year with unexplained symptoms and no viable treatments began, we finally received a diagnosis. ‘Multiple system atrophy is my diagnosis’, said her movement disorders specialist, and from that day on the role of care partner became my life. During the next three years we found the Multiple System Atrophy Coalition to be the best support available for anyone on an MSA journey. The MSA Coalition soon elected me to the role of Caregiver Representative and I was proud to be the first to serve in that capacity representing all current MSA caregivers. My care partner role ended with the passing of my wife but the need for someone to advocate for MSA did not and it was both my and the board’s wish that I continue to serve as a member of the MSA Coalition Board of Directors. No longer the representative for current caregivers, I nonetheless have taken Colleen’s wish to “Beat the Beast!” to heart and continue to serve the MSA community as an ardent advocate and fundraiser.”
Lawrence (Larry) R. Kellerman has taken a long, circuitous route to be where he is today. He served in the U.S. Army from 1971-1974 and the U.S. Army Reserve from 1985-1990. The first in his family to attain a college degree, he earned his AA in 1980, BSE in 1983, MSE in 1986 and PhD in 1994. His primary subject has been science. He taught 7th and 8th graders for seven years, university undergraduate and graduate students at Bradley University, Peoria, Illinois for seven years and served as Coordinator of Grants Development, adjunct faculty and academic advisor at Illinois Central College in East Peoria, Illinois. Along the way he worked with other faculty members to develop education methods classes for soon-to-be and working middle school teachers and two introductory science classes. “Science for all” has been his mantra for almost forty years and he continues to extoll science’s virtues.
The MSA Coalition became a conduit for his work as his wife Colleen suffered from multiple system atrophy, writing a daily entry for the Caregiver Representative Facebook page and sharing their story wherever he could. While caring for her he also served as co-chair of the Advocacy working group at the Global MSA Research Roadmap meeting in 2014. Following Colleen’s passing in February 2016 he has served as the MSA Coalition representative for the Rare Diseases Clinical Research Network’s Coalition of Patient Advocacy Groups (CPAG), on the External Advisory Board of the Autonomic Rare Disease Clinical Research Consortium and on various MSA Coalition board committees. He has served as the lead support line volunteer (866-737-5999) for the MSA Coalition since 2016 and has also become the facilitator for two support groups in Illinois. He continues to support the MSA Coalition’s drive to raise funds, planning and hosting many successful fundraisers with themes highlighting his wife’s two loves, college basketball and blues music and, as always, striving to make the “science of MSA” accessible to all. Larry has served on the MSA Coalition board since 2014.
“MSA took my mom from me and caused me to fall into a caregiving role far too young. Having to watch the woman, who was my world, rapidly decline before my eyes was traumatizing – for both of us. Now that she has passed I’ve made it my mission to educate, inform and support care partners of MSA patients – to feel seen, heard & help make the care journey easier to navigate every step of the way.”
Adrienne Marioles is a professional speaker, ambassador and advocate on the topic of Millennial Caregiving and joined The MSA Coalition Board of Directors in 2022. Adrienne’s speaking engagements focus on sharing her story and journey as an only-child caregiver to her mom, Hetty, who passed away in 2020 after living with Multiple System Atrophy since 2010. Adrienne’s story as Hetty’s caregiver was featured in a Wall Street Journal article, ‘The Call To Care for Aging Parents Comes Sooner Now.’ Her story has also been featured in Health magazine, Toronto Sun and Vox.com to name a few. In addition to keynoting national conferences for Leading Age, National Church Residences and The Multiple System Atrophy Coalition, Adrienne has also been involved with various caregiving campaigns including serving as a caregiver ambassador for EMD Serono’s Embracing Carers, Leading Age’s ‘Carry the Convo’ and The Scan Foundation’s ‘Do You Give a Care’. You can follow her on Instagram and Facebook @younglifeinterrupted, or subscribe to her podcast, Young Life Interrupted, where she is lending a voice to her journey so other young caregivers can feel seen, heard and supported.
Vikram Khurana, MD, PhD - Scientific Liaison
Vik Khurana is Chief of the Division of Movement Disorders at Brigham and Women’s Hospital and Harvard Medical School, where he also leads the Dr B.R. and Dr C.R. Shetty Initiative in Parkinsonian Disorders. He is Principal Faculty at the Harvard Stem Cell Institute, Associate Member of the Broad Institute of Harvard and MIT, and Senior Advisor (Discovery Technologies) to Yumanity Therapeutics, a company he co-founded in 2014. His clinical and research interests relate to neurodegenerative disorders focusing on Parkinson’s disease, multiple system atrophy (MSA), cerebellar ataxia and related disorders. Patients with these disorders are seen by him at the P+A+MSA Clinic at Brigham and Women’s Hospital.
Vik is a medical graduate of the University of Sydney, Australia, and came to Boston as a Fulbright Scholar in 2001, obtaining his Ph.D. in neurobiology from Harvard University in 2006. He completed his neurology residency at Brigham and Women’s and Massachusetts General Hospitals, and fellowship in movement disorders and ataxia at Massachusetts General Hospital, where he was on the faculty from 2012 to 2016. He received postdoctoral scientific training in the laboratories of Susan Lindquist and Rudolf Jaenisch at the Whitehead Institute, where he co-led a study that succeeded in identifying and reversing pathologies in stem-cell models of Parkinson’s disease (Science 2013). He has gone on to demonstrate that genome-scale screening combined with computational network approaches and stem-cell models offer promising approaches for stratifying patients according to disease mechanism (Cell Systems, 2017). His current research continues to bring stem-cell technologies toward personalized and precise diagnostics and therapeutics for neurodegenerative disorders.
Vik’s research has been recognized through awards from the American Academy of Neurology, American Australian Association, Parkinson’s Disease Foundation, Multiple System Atrophy Coalition, National Ataxia Foundation and Harvard Neurodiscovery Center. In 2018, he was named a Robertson Investigator of the New York Stem Cell Foundation.
Alan Smally – Patient Representative
Like many MSA patients I was diagnosed initially with Parkinson’s disease in 2016 after 1-2 years of mild symptoms. The possibility of MSA was discussed and the likelihood was thought to be low. I was competing in triathlons and doing well in my age group at that time. Symptom worsening prompted me to see a movement disorder specialist who diagnosed possible MSA and on followup visit, likely MSA.
My wife (a pediatrician) and I had retired in 2014 and purchased an Airstream RV trailer. Between 2014 and 2020 we traveled twice yearly on 2-3 month journeys around the USA. Our travels totaled 150,000 miles. We visited most states and National Parks in the lower 48. RVing was curtailed by MSA.
After growing up in Florida, I attended the University of North Carolina as an undergraduate and the University of Florida College of Medicine. The last 27 years of my career were spent in the Emergency Department of Hartford Hospital, an urban high volume (>100,000 patients/year) and high acuity teaching hospital affiliated with the University of Connecticut School of Medicine. During my career, I served as Chief of Emergency Medicine at the University and Hartford Hospital, Medical Director of the Hartford Hospital ED, and Professor of Traumatology and Emergency Medicine at the University. In addition to my administrative responsibilities as chief, I was elected to Hartford Hospital Medical Executive Committee for several terms, including two as treasurer.
My greatest career enjoyment was practicing clinical emergency medicine and teaching residents in the clinical setting. Teaching physicians and other healthcare professionals was also important to me. I authored or coauthored over 50 publications in the medical literature. Awards received included residency teacher of the year award three times; Phil Stent Award for “leadership and outstanding contributions to Emergency Medicine in CT” by the Connecticut College of Emergency Physicians; University of CT Integrated Residency in Emergency Medicine Lighthouse Award for “leadership and support of residency education”; and Distinguished Service Award given annually by the Hartford Hospital Medical Staff.
Andre Cote Barch – Care Partner Representative
My mother, Isabelle, was diagnosed with probable MSA-P in 2019 after initially being diagnosed with Parkinson’s disease in 2018. As a young caregiver, I have supported my mother in her daily tasks, visits to neurologists across North America, and her clinical trial in New York City. The MSA Coalition has provided my family with educational resources and supportive communities which enable both my mother and my family to flourish in new ways. I am hoping to share my experiences and advocate for caregivers as a member of the Board of Directors.
I currently serve as an Investment Banking Associate at Greenhill & Co. where I am focused on serving clients in Canada across industries. Prior to that, I served as an Investment Banking Analyst at Gordon Dyal & Co. in New York City and RBC Capital Markets in Toronto and Calgary. I hold a Bachelor of Commerce from McGill University. I live In Toronto, Ontario with my wife, Emily, and share caregiving duties with my father, Richard and my sister, Margot.
My wife went with me to see my Neurologist at Emory when he confirmed my diagnosis of MSA-P, in April 2022. I’ll never forget the ride home, we were devastated with the news. However, both of us had a good start at our understanding of the condition and how it could affect me over time. And since then, I’ve been focused on learning as much as possible about the condition and research related to improving the lives of people that suffer from MSA.
I’m married to an incredible and beautiful woman, Martha. We have a blended family with 5 amazing children, 3 girls and 2 boys. They are all very close, very different and doing well. I am so proud of each one of them! We also recently became Grandparents and have 2 G-babies that are about 2 weeks apart and recently turned 1 year old.
Way back, a few years ago, I graduated from the University of South Carolina with an undergraduate degree in chemistry and later went back to get an MBA from the Moore School of Business. After graduation, I moved to Georgia where I worked with Georgia Institute of Technology’s Advanced Technology Development Center (ATDC). The ATDC was set up by Georgia’s Board of Regents to provide support to researchers within Georgia’s University System designed to help commercialize technology, often developed through research contracts within the various institutions. I left Georgia Tech and started a technology services company that I ran for almost 20 years, which I ended up selling. For the past few years I provided new business development support for large and speciality accounting and professional services firms such as Crowe LLP, True Partners Consulting and RSM US, LLC. I took disability leave in June 2022 and am currently not working.
MSA is a rare condition and there isn’t much information out there. Fortunately, I found the MSA Coalition organization early on and it has been such a beneficial resource and most importantly, a place where I connect with others who have MSA or are care takers/loved ones as well as people interested in MSA related research.
In 1998 my mother Gloria Finnerty was at the top of her game! She had a fabulous job, a loving family and a bright future right in front of her. Then little things started happening, things she could not understand. Things that made people notice. At the time she was living alone and keeping these events to herself. Until she couldn’t hide it anymore. Finally, after many trips to many different doctors, she was diagnosed with Parkinson’s Disease like many MSA patients. Little did we know that it was Multiple System Atrophy. After many years of looking for the correct diagnosis, we finally landed on MSA. I had the honor of being a caregiver for her throughout her battle. It was a unique dynamic taking care of the woman who raised you and should be in the prime of her life. My mother fought this disease from 1998 until her passing on February 8th, 2013, at the young age of 64. For her to make that age and fight what she fought is the single greatest achievement that I will ever witness in my life.
In September of 2013, I attended the Annual Patient & Family Conference in Milwaukee and was amazed so many other people were suffering like her. At that point I made it a goal to spread the word about MSA. To raise awareness could be the key to turning the tide in this battle.
I have lived in the Western New York area since 1982. I consider myself a proud Buffalonian and a proud part of #BillsMafia. This area supports each other with unquestioned love and support. I attended St. Francis High School and SUNY Fredonia before entering the foodservice industry on 6/17/1994. Working at J. P. Fitzgeralds for 21 years until after my mom passed gave me a unique opportunity to provide round the clock care for my mother with the help of my brother and future wife. In 2014, I started working for Meals on Wheels of WNY until the present day. I realized giving back to the community is my true passion.
In 2016 we opened Finnerty’s Tap Room in Ellicottville, NY. Being an owner/operator gave me the experience of running a business on all different levels. From operations, to staffing to community involvement, the amount of knowledge I’ve gained over the last 6 years has been incredible. I’m looking forward of using that to help spread the word about MSA!
Emeritus Board Members
David Robertson, MD - Founder
Dr. David Robertson is a Professor of Neurology, Vanderbilt University Medical Center. He is a clinical researcher specializing in autonomic disorders. He treats patients with MSA from all over the world and provides these patients with compassion and honesty. Dr. Robertson’s main responsibility as a Board member is to serve as a Physician Advocate and advisor to the Board while also making other physicians aware of the services of the MSA Coalition. Dr. Robertson is a founding member of the MSA Coalition (formerly known as the Shy-Drager MSA Support Group). He joined the Board of Directors in 1999.
Vera James - Former Chairman
“I still have the sheet of paper that the neurologist gave us the day my husband received his diagnosis. On it, it said: “not PD but Multiple System Atrophy come back in a month”. We left his office feeling on top of the world because it wasn’t PD. Little did we know until we searched the internet to see what it was. From then on I did everything I could to learn about this rare disorder. In doing so, I came across the SDS/MSA support group, now known as the MSA Coalition. The first contact I made was Don Summers, then president of the organization. Over time Don got to know me and one day he called to ask if I would speak to a family whose father had just received the diagnosis. This call came at a time when I had just lost my husband the day before. After thinking for a moment I realized I couldn’t change what was going on in my life, but maybe I could in someone else’s life, so I made that call. That is still my goal, hopefully to made a difference for others that face MSA.”
Vera is a surviving caregiver to her late husband Fred who was diagnosed with Multiple System Atrophy in 1998 and died in 2003. She has previously facilitated monthly patient/caregiver support group meetings in the Southern California area and continues to assist on monthly support webinars and on online forums. For more than 10 years, Vera answered the MSA Coalition toll-free support hot line (1-866-737-5999) from her home and provided information and emotional support to countless families. Vera joined the Board of Directors in 2004 and actively served until 2017, including a term as Chairperson, and is now a member of the Emeritus Board.
Judy H. Biedenharn, RN, BS - Former Chairman
“My husband, Ned, had Shy-Drager Syndrome/ Multiple System Atrophy symptoms beginning in the 1980s and, during a visit to Vanderbilt in the early 1990s for a confirming second opinion, I became acquainted with the SDS Support Group. The internet was not a household word at that time, so a telephone support line was the primary mode of communication, combined with printed material and an annual patient/caregiver support group conference. The location of this annual conference moved to a different city each year. In 2004, the year after Ned’s death, the patient support group conference was held in my home state of Ohio and I attended my very first patient/caregiver conference. I immediately fell in love with the organization and the education and support it gave to patients and their families. I began working with the Board, helping with the toll-free support line and working on future annual meetings. In 2009, I became an official member of the Board of Directors, later serving as its Chairperson for a few years. The organization evolved from the SDS Support Group into the Multiple System Atrophy Coalition, and grew from a 5-member Board (2 neurologists and 3 lay members) into an active 12-member Board, a Scientific Advisory Board, and an Emeritus Board (former Board members: Dr. David Robertson, Dr. Tom Chelimsky, Vera James and myself).
I am very proud to be associated with the MSA Coalition as it celebrates 30 years of Support and Education to patients and their families, and the more recently added pillars of Advocacy and Research. Beginning with caregiver Dorothy Trainor-Kingsbury and Dr. Robertson, the Coalition has grown to serve not only the MSA community in the United States, but is the premier organization helping MSA patients and medical researchers globally.”
After being a legal secretary for a few years, Judy became a wife and a “stay-at-home” Mom until her three children were all in school. After returning to work as a school secretary, husband Ned encouraged her to follow her life-long dream to become a nurse, so she returned to school as an adult learner earning her nursing diploma from Mount Carmel School of Nursing in Columbus, Ohio. Judy worked in Surgical Oncology and the Emergency Room for three years and then began working toward a BS degree from Mount St. Joseph University in Cincinnati, Ohio. (This took a few years as she was also caregiver to Ned, whose MSA symptoms were progressing.) She left the hospital setting and entered the field of Correctional Health Care — first as a staff nurse and then as a Health Services Administrator, managing medical clinics in both adult and juvenile prison settings.
In 2009, Judy retired from working full-time and began working part-time as a substitute School Nurse in two elementary neighborhood schools. She has since also “retired” from the active Board of Directors of the MSA Coalition. Judy served from 2008-2018, including two terms as Chairperson, and is now a member of the Emeritus Board.
Don Crouse - Former Vice Chair & Founding Board Member
“Over the past 20 plus years, I have come to know hundreds of people in the multiple system atrophy community. While it is a devastating and relentless disorder, I continue to be inspired by the bravery, tenacity, and grace that so many display in the fight against MSA. This inspiration and the desire to make a difference helps fuel the efforts of the MSA Coalition. I am proud of the MSA Coalition’s transparency and its well documented track-record of accomplishments. It is my honor to volunteer for this organization in service of all MSA warriors.”
Don joined The MSA Coalition (formerly known as the Shy-Drager MSA Support Group) in 1998 and is one of the originating Board members. Don became connected to multiple system atrophy as a result of his marketing career in the pharmaceutical industry, where he worked on two products commonly prescribed to people with MSA. Because there was a big unmet need for MSA awareness, education and research, Don decided to volunteer his time and business knowledge to the MSA Coalition. In his 20 years of volunteerism, Don has played an invaluable leadership role in building the MSA Coalition into a world-class charitable organization. In 2012, it was his vision to expand the organization from primarily being a support group into a nonprofit that also funded research and developed educational programming.
In 2018, as a representative of the MSA Coalition, Don was invited to serve on the External Advisory Committee for the Rare Diseases Clinical Research Network (RDCRN) Autonomic Disorders Consortium’s U54 grant. As a patient advocate, Don helps to ensure alignment between the Consortium and MSA advocacy initiatives.
Don lives in Charlotte, NC with his wife Geri (also a dedicated volunteer for The MSA Coalition) and two daughters. Don also suffers from a rare disease known as white spot syndrome, which affects his retina and has caused a substantial decrease in his central vision.
Don’s tenure on the board of The MSA Coalition came to an end in 2021 after decades of dedicated work to the community. He plans to spend this new chapter of his life with family but will still be involved with the MSA community.
Thomas Chelimsky, MD - Physician Advisor
Dr. Thomas Chelimsky is a Professor and Chair of Neurology at the Medical College of Wisconsin and is the current President of the American Autonomic Society. He sees multiple system atrophy patients in his clinic practice. His main responsibility as a Board Member is to serve as a Physician Advocate and advisor to the Board while also making other physicians aware of the services of the MSA Coalition. Dr. Chelimsky joined the Board of Directors in 2001.
Hadley Ferguson - Former Patient Representative
In 2010 Hadley was diagnosed with Young Onset Parkinson’s disease (YOPD). As her symptoms progressed the diagnosis changed 3 years later to Multiple System Atrophy (Type P). Soon after her YOPD diagnosis, Hadley co-founded Summit for Parkinson’s, the only Parkinson’s organization serving the needs of patients and their families in the state of Montana. She traveled to see specialists about her medical condition to cities near Montana and realized there were many resources available to people with Parkinson’s, but since MT is such a large state with a small population the availability of those same resources was lacking. Summit for Parkinson’s was an opportunity to bring people together to share information and programs that seem readily available in larger cities, but harder to come by in her home state. Hadley quickly networked with many of the larger Parkinson’s organizations to help bring education and awareness to the disease. She worked most closely with the Brian Grant Foundation in Portland, OR, and the Michael J. Fox Foundation. As soon as Hadley was diagnosed with MSA, she immediately wanted to get involved with the MSA Community and help where she could. Summit for Parkinson’s also embraced this shift and has incorporated information about different types of Atypical Parkinsonism in their conference materials and presentations.
Hadley holds a Bachelor of Fine Arts degree in drawing and sculpture from the University of Montana. After graduating, she moved to Portland, OR, where she worked as a contract artist painting murals and artistic details for the McMenamin Co. When she returned to Montana in 2001 she continued her freelance artwork. Ferguson has worked on many public and private commissions for collectors throughout the United States and is represented by Radius Gallery in Missoula, MT. Her most recent public work is a two-painting series for the Montana State Capitol Building permanent collection about the history of women in Montana. Hadley continues to paint, but has transitioned to creating smaller works.
Hadley feels much gratitude and joy for life and her very close family and friends. Her daughter, Sarah, husband, John, and parents all support her and inspire her each day to live life to the fullest and help others. She is honored to have an opportunity to work with the MSA Coalition and is very passionate about bringing education, awareness and research opportunities to the MSA Community.