Board of Directors
Judy was caregiver to her husband Ned after he was diagnosed with Multiple System Atrophy in 1991, until his death in 2003. While Ned was living, Judy held support group meetings in their home. After Ned’s death, Judy attended her first patient/caregiver support group meeting sponsored by the MSA Coalition as it was held in Ohio that year.She has attended the last 10 conferences, and continues to meet with patients and their families in Ohio and surrounding areas whenever possible. Judy also answers the toll-free support hot line (1-866-737-5999).
Professionally, Judy is a Registered Nurse (retired) with a nursing degree from Mount Carmel School of Nursing in Columbus, Ohio, and a Bachelor of Science degree from The College of Mount Saint Joseph in Cincinnati, Ohio, with an emphasis on the Management of Nursing Services. After working in Surgical Oncology and Emergency Departments for a few years, the majority of her professional career was spent managing health services in the field of Correctional Health Care.
Judy joined the Board in 2008 where she continues to support and promote the pillars of the MSA Coalition:
Support * Education * Research * Advocacy
Don 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. Don became connected to multiple system atrophy through his career in the pharmaceutical industry. Don served as the ProAmatine (midodrine) Product Manager at Roberts Pharmaceuticals (now Shire), as well as the National Brand Director at Chelsea Therapeutics, where he worked on gaining approval for Northera (droxidopa). Both products are approved in the US for the treatment of neurogenic orthostatic hypotension, a condition that affects approximately 80% of MSA patients. Through his contact with people affected by multiple system atrophy, Don has a strong desire to see the MSA Coalition reach its mission of finding a cure.Don volunteers his business skills to the MSA community to help build and manage a world-class charitable organization: obtaining 501©3 status, advocating on Capitol Hill, receiving certification from non-profit watchdogs such as Guide Star, establishing a dedicated MSA research fund, research grant program and scientific advisory board. Don also maintains the MSA Coalition website and social media sites.
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.
Carol was a caregiver for her husband Rob, who was diagnosed with Multiple System Atrophy in 1998 and died in 2009. She has been an active participant in both on-line and in-person support groups for MSA since shortly after her husband became ill, and currently moderate a monthly webinar for caregivers of people with MSA.Professionally, Carol is a retired financial executive with more than 30 years of experience in management of technology companies. Carol currently serves as a Director of Edmund Optics, Inc., a multi-national manufacturer of precision optical components, as a Trustee of the Huntington Theatre Company in Boston, and as Chair of the Neuroscience Advisory Committee at Beth Israel Deaconess Medical Center in Boston. She has a B.A. from Boston University in English Language and Literature and an M.S. from Northeastern University in Accounting.
Carol joined the Board of Directors in 2013.
Pam had a family member affected by Multiple System Atrophy and began seeking information on the disease in 1994, finding very limited sources available at that time. Connecting with others through the internet she began sharing information and became involved in leading on-line support groups for Cerebellar Ataxia and MSA.In 2010, Pam created the website MSAawareness.org to highlight the best sources of information on the disease from around the world. 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.
Professionally, Pam is currently a Senior Consultant for an IT service company and has worked for clients in the Telecommunications, Insurance and Utility sectors. After earning a Bachelor of Science degree in Computer Science from the University of New Brunswick, she began her career with Maritime Life Assurance Company in Halifax, Nova Scotia, a subsidiary of John Hancock, Boston, MA. While there she obtained her Fellow, Life Management Institute, a life insurance and financial services industry management designation offered by LOMA in Atlanta GA. Pam joined the Board of Directors in 2013.
With his appointment in 2014, Tom becomes the first-ever patient to serve on the MSA Coalition’s Board of Directors. Tom hopes to serve as a voice for patients everywhere, while helping the MSA Coalition advance fundraising efforts to increase both MSA awareness and research.After presenting with a rapidly growing set of symptoms pointing to acute autonomic dysfunction, Tom was diagnosed with MSA-P in June 2008 at age 48. Chronic bouts of pneumonia, along with swallowing and speaking difficulties, plagued Tom soon after diagnosis. An aggressive speech and swallowing therapy regime has been followed since, along with an ambitious exercise program. In the past year, a concussion and recurrent bouts of shingles have at times exacerbated both his autonomic symptoms and movement issues. Known for his optimistic outlook, Tom’s family credits his years as a high school and college basketball standout for his steadfast commitment to hours of daily strength, flexibility and aerobic training.
Professionally, Tom was a Sales & Business Development executive for technology firms such as Oracle, NeXT (Apple), Active Software and Microsoft. A six-year stint working closely with the iconic Steve Jobs at NeXT was particularly memorable. Tom earned his B.S. and MBA degrees from Mount St. Mary’s University (MD), and has served on multiple Boards spanning business, education, and other non-profit interests. He lives at home in Wilmington NC with his wife Trish and two college-aged sons.
Larry is the proud husband of Mary Colleen, a multiple system atrophy Type C (Cerebellar) patient. The journey to this diagnosis took over five years, five different physicians/specialists and multiple diagnoses. As the caregiver he became an integral part of that journey and brings that experience to the caregiver representative position. Caregiving has many aspects, among them ensuring the patient has the best opportunity daily for a good quality of life, informing doctors about the disease prior to a visit and advocating for the disease among those who do not know about it. Larry came to Facebook late, following the national MSA conference in September 2013, and has established the MSA Awareness community page to share personal anecdotes, information and questions that arise in a typical day.With his advanced degree in Science Education and thirty years of teaching and learning at all levels, from 2nd grade to graduate school, Larry is ready to join all who are dedicated to defeating this disease. Educating caregivers, doctors and health professionals about the disease, fundraising, raising awareness and ensuring the development and use of the patient registry are among his goals. Larry joined the Board of Directors in 2014.
Philip holds a graduate degree in Philosophy and Comparative Religions. He teaches at the University of Detroit Mercy, a Jesuit and Mercy sponsored institution. Apart from teaching, Philip is the caregiver of his elderly mother and directs the Defeat MSA: Joseph G. Fortier Foundation, a non-profit public charity he founded in honor of his late brother. The youngest of six brothers, Philip was the former caregiver for Joe, who suffered with an advanced case of Multiple System Atrophy for three years until he passed away in 2013. Prior to the onset of his illness, Joe worked in the sleep disorders field both establishing and managing sleep clinics and working in sleep research for more than 25 years. Joe was passionate about supporting medical research and doing his part to help improve the health of others. Philip has made efforts to increase MSA awareness with the MSA Shoe. He is the global coordinator for the MSA Shoe, a traveling shoe that helps raise awareness about Multiple System Atrophy. Philip also worked to expand access to drugs that help MSA patients. Implementing educational programs for health professionals, developing a national medical equipment loaner program, and collaborating with other charities to make government funding available to MSA patients are a few of his goals. Philip is assisted in this charitable work by his spouse, Dr. Pratik Bhattacharya. Dr. B (as he is fondly called by his patients) is an Assistant Professor of Neurology at Wayne State University, and serves as the Director of Stroke Quality and Chief of Neurology at Sinai Grace Hospital in Detroit. Dr. Bhattacharya serves on the scientific advisory board of the Defeat MSA Foundation. Philip joined the Board of Directors in 2014.
Cynthia was primary caregiver 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, 2009. With her siblings, Cynthia founded MSA NJ, a registered non-profit to support those in the tri-state area impacted by MSA. Though young, MSA NJ has already hosted several events and assisted in bringing the Coalition conference to New Jersey in 2012, one of the larger sessions to date.“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.”
Appointed to the Board in 2014, Cynthia hopes to expand education and patient support, and to increase professional awareness and fundraising initiatives in an effort to bring MSA needs to the global forefront.
Cynthia completed her doctoral degree at Columbia University. She is a senior professor of mathematics and department chairperson at Union County College. During her tenure at the College, she has been a proponent of service-learning, coordinated various programs, planned numerous events, and founded the College’s Student Volunteer Organization. Cynthia is close with her siblings, Kym and Ron, and is mommy to four fur babies, enjoying the unconditional love and loyalty of her dogs.
Dr. David Robertson, MD
Dr. 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.
Dr. Thomas Chelimsky, MD