The MSA Coalition is poised to continue its strong growth as a national nonprofit focused on education, support, advocacy, and research grant funding as it pursues its primary mission of finding a cure for Multiple System Atrophy.
The Multiple System Atrophy Coalition, a growing nonprofit 501 (c) 3 organization has announced the appointment of five new members to its Board of Directors. Earlier this year the Coalition announced the election of its executive directors. The MSA Coalition now has 4 Executive Directors, 6 Board members and 2 Physician Advisors. These 12 dedicated volunteers are fully focused on executing The MSA Coalition mission of education, support, advocacy and research funding for the neurological disorder Multiple System Atrophy (MSA). The MSA Coalition also aims to unite the MSA community and work in partnership with like-minded advocates and organizations to eventually defeat multiple system atrophy.
The five new Board members are made up of three former caregivers, one active caregiver, and one MSA patient. Each new member brings unique skill sets, passion, and dedication to the multiple system atrophy cause. In addition, two of the new appointees run their own, well-respected MSA organizations.
Philip Fortier cared for his brother Joseph during his fight with MSA. Upon Joseph’s passing in 2012, Philip started the Defeat MSA Joseph G Fortier Foundation to raise awareness and support MSA research. Philip is an experienced educator and plans to use his position on the Board to increase awareness and educate the community about MSA. Philip is already well known in the MSA community for his tireless campaign with Tim’s MSA Shoe, an iconic symbol of multiple system atrophy.
Lawrence Kellerman (Caregiver Representative) is the first-ever active caregiver to serve on the Board of Directors. He is the proud husband of Mary Colleen, a multiple system atrophy Type C (Cerebellar) patient. Larry holds a PhD in science education and plans to use his first hand experiences with the long and frustrating diagnostic process and daily life as a caregiver to help and educate other caregivers, doctors and health professionals about the disorder. He is also passionate about fundraising, increasing awareness and ensuring the development and use of the global MSA patient registry.
Tom Looney (Patient Representative) is the first-ever patient to serve on the Board of Directors. He plans to apply his substantial business experience and network of professional contacts to help The MSA Coalition continue its renewed growth through fundraising and awareness activities, while also serving as a voice for all MSA patients. Despite his diagnosis with MSA-P (Parkinsonism) in June 2008 at age 48, Tom continues to exude a positive attitude in his approach to life.
Cynthia Roemer was the primary caregiver to her mother, Dolores, who was diagnosed with MSA in 2004 and lost her battle with MSA on Mother’s Day, 2009. After their Mother passed away, Cynthia and her family founded MSA NJ, a registered non-profit to support the MSA community in the tri-state area. Prior to joining the Board, Cynthia helped organize the 2012 MSA Coalition Annual Conference held in Elizabeth, NJ. Cynthia holds a Doctor of Education degree and plans to work to expand MSA education, patient support, and fundraising initiatives, while also helping the charity with long-term strategic planning.
Sharon Sutton was the primary caregiver for her husband of 39 years, Eric Sutton. He was diagnosed officially with MSA-P in 2010 and passed away on Nov 11, 2013. Sharon has valuable experience as a rare disease advocate both for MSA and Biliary Atresia, a condition that affected her young son’s liver. She and her husband were leaders in advocating for liver transplantation, insurance coverage, and later for MSA awareness. Sharon has been a public speaker at the Rare Disease Rally in Austin Texas, has done media interviews for MSA Awareness Month, and is a regular contributor to the online MSA Yahoo and Facebook support groups. With her new role on the MSA Coalition Board, Sharon plans to leverage her voice on important issues affecting the MSA community, such as autonomic testing, insurance coverage, and government funding for rare disease research.
“We are very excited to see the expansion of our Board of Directors,” stated Judy Biedenharn, President of The MSA Coalition. “The past two years has seen extensive growth for the Coalition, both in terms of fundraising and educational/awareness offerings. In order to achieve our primary mission of finding a cure for multiple system atrophy, our Board needed the addition of talented individuals. Our five new Board members all bring extensive business, advocacy and/or educational backgrounds to the table, while also having real-world experience in the fight against MSA. Additionally, we view the new additions of a patient representative and a caregiver representative as critical to connecting at the highest level possible with the MSA community we serve.”
These five new members of The Multiple System Atrophy Coalition Board of Directors join current board members Judy Biedenharn, Vera James, Don Crouse, Pam Bower, Carol Langer, Dr. David Robertson, M.D. and Dr. Thomas Chelimsky, M.D. The new, larger Board of Directors is now “United to Defeat Multiple System Atrophy”.
About Multiple System Atrophy
Multiple system atrophy is a rare and fatal disorder with less than 15,000 Americans diagnosed and 35,000 undiagnosed at any given time. According to the National Institutes of Health, “Multiple system atrophy is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failure such as fainting spells and bladder control problems (neurogenic orthostatic hypotension), combined with motor control symptoms such as tremor, rigidity and loss of muscle coordination. MSA affects both men and women primarily in their 50s. MSA tends to advance rapidly over the course of nine to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. Currently no cure is available.”
About the Multiple System Atrophy Coalition
The Multiple System Atrophy Coalition is a positive beacon of hope standing up to a little known, rare, insidious disorder. Made up of dedicated volunteers, The MSA Coalition has a primary purpose of encouraging and funding research to find a cure. The Coalition also provides much needed patient and caregiver support, educational resources, and advocacy to create awareness and to fight for issues important to the MSA community. For more information or to donate to The Multiple System Atrophy Coalition, please visit: http://www.Multiple-System-Atrophy.org.