The Multiple System Atrophy Coalition's HistoryEnhancing Quality of Life and Building Hope for 30 Years
History of the MSA Coalition
(Formerly the Shy-Drager / MSA Support Group)
The First 10 Years: SDS/MSA Support Group
The Multiple System Atrophy Coalition® originated as the Shy-Drager Syndrome / MSA Support Group and was founded in 1989 by Dorothy Trainor-Kingsbury and Dr. Sterling Edwards of Albuquerque, New Mexico with the help and encouragement of Dr. David Robertson of Vanderbilt University Medical Center in Nashville, Tennessee. Dorothy, who lost her husband to Shy-Drager Syndrome (now known as Multiple System Atrophy), was director the group which originally operated as an informal unincorporated organization.
The initial goal of the support group was to provide a forum for patients and their caregivers to interact with others dealing with the same horrible disease. In 1995, Dr. David Robertson and his staff at Vanderbilt were responsible for establishing the very first e-mail based support group for MSA that still exists today as the online “Shy-Drager MSA yahoo group” list. Through the efforts of Dr. Robertson and Richard Caulfield, then vice president of marketing at Roberts Pharmaceuticals, Roberts became the corporate sponsor of the group. With funding provided by the pharmaceutical company, the SDS/MSA Support Group established a toll-free information and support line, answered by Dorothy from her home, and also began to host an annual patient/caregiver meeting.
From 1990-1999, the annual SDS/MSA Support Group’s patient/caregiver meeting was held at the same time and location as the American Autonomic Society (AAS) conference. This close association with the AAS allowed the Support Group to provide interaction between the patients and the researchers studying the disease. Importantly, these annual meetings allowed generally isolated patients and caregivers to interact with their peers. Forums are still provided at our annual meetings to allow patients only, and caregivers only, to have discussions among themselves. This important format provides an opportunity for venting emotional frustrations without hurting their patients/caregivers feelings.
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unquestioned In late 1998, Dorothy Trainor-Kingsbury retired from the group. Her obvious successor was Don Summers who filled the role as President in February 1999. Don, thankful for the assistance he and his wife Gwen had received from Dorothy’s efforts, had stayed active with the group after Gwen’s passing from Shy-Drager Syndrome in 1997.
Official Incorporation and Nonprofit Status
As President of the Support Group, Don Summers added some fresh enthusiasm to the organization. Under his direction, the toll-free information and support line was revitalized and Don personally spoke with all who needed help. In 1999 he expanded the board of directors and applied for incorporation in the state of Texas. Incorporation was granted on December 1, 1999 with the following originating board members listed:
Mr. Don Crouse, Red Bank, New Jersey
Mrs. Sylvia Dickinson, White Bluff, Tennessee
Dr. David Robertson, Nashville, Tennessee
Mr. Donald F. Summers, Austin, Texas
Mrs. Lynn Wood, Evergreen, Colorado
One of Don Summers’ biggest achievements as President was securing official federal 501(c)(3) nonprofit status for the organization in June of 2004. Securing the 501(c)(3) designation had an immediate positive impact on grass root donations as the organization became the first MSA charity in the US to facilitate tax-deductible contributions.
In 2010, Don Summers retired from the SDS/MSA Support Group and Vera James and Judy Biedenharn were elected as the new co-Presidents, while Don Crouse, a board member since 1999, was elected to the position of Vice President. Founding board member, Dr. David Robertson and Dr. Tom Chelimsky, a board member since 1999, also renewed their commitment to the cause by continuing their board roles as physician advisors.
Sadly, Don Summers passed away in 2013. In his memory the board of directors established the Don Summers Memorial MSA Travel Awards to encourage early career investigators to take up the study of MSA and present their work at the annual American Autonomic Society conference.
Transforming Into The Multiple System Atrophy Coalition
In 2012, original board member Don Crouse had an opportunity to dedicate substantial time to the cause. Following his vision the SDS/MSA Support Group was transformed into the premier US charitable organization dedicated to Multiple System Atrophy. During this transformative time the MSA Coalition’s Board (Co-President’s Judy Biedenhard & Vera James, Vice-President Don Crouse, and Physician Advisors David Rovertson & Tom Chelimsky) expanded the MSA Coalition’s mission statement, shifting from primarily support, to a new focus on research grant funding along with leading educational and advocacy initiatives. The organization recruited several new board members as well as a world-class Scientific Advisory Board (SAB). With this new infusion of energy, the board established the MSA Research Grant Program, and prepared to launch a new website with improved educational materials and increased fundraising capacity.
In January of 2013, to reflect its new mission and to also reflect the emergence of Multiple System Atrophy as the primary name for the rare neurodegenerative disorder the board voted to officially change the name of the SDS/MSA Support Group to The Multiple System Atrophy Coalition® or The MSA Coalition®, for short. With its new name, mission, website and slogan “United to Defeat MSA” in place the MSA Coalition was able to quickly increase its revenue over the next few years, while expanding its reach on a global scale to help families affected by MSA.
Today, under the leadership of Board Chairman Cynthia Roemer, the MSA Coalition is executing its mission by expanding educational initiatives to help physicians make an earlier diagnosis, participating in advocacy events to raise awareness for MSA and Rare Disease issues, leading and participating in MSA Awareness Month activities, while actively funding well-vetted MSA research grants with the goal of eventually finding a cause and a cure for Multiple System Atrophy. Additionally, the MSA Coalition has initiated an ongoing collaborative partnership with most of the worlds other MSA advocacy organizations. Led by the MSA Coalition Board Chair, the first MSA Global MSA Advocacy Meeting was hosted at the 2018 International MSA Congress, laying the foundation for the Global MSA Advocates Consortium. As of 2019, with the exceptional leadership of Pam Bower, the MSA Coalition Research Committee Chair, the MSA Coalition has funded 37 research grants around the world totaling nearly $1.7 million. A special acknowledgement to the Rex Griswold Foundation which made a large donation to the MSA Coalition to kick start the first year of research grant funding in 2013.
The MSA Coalition is a charity with a dedicated volunteer board of directors, most of whom have been personally impacted by Multiple System Atrophy. The MSA Coalition conducts its organizational business with diligent board oversight and governance. Under the guidance of Treasurer, Carol Langer who also chairs the MSA Coalition’s Finance Committee, each year the MSA Coalition’s financial statements and activity are audited by an independent third-party accounting firm. The Coalition encourages any person interested in supporting the MSA cause to review our financial statements and to learn about our accomplishments as we continue to build hope for the MSA community. The MSA Coalition is truly North Americas premier multiple system atrophy nonprofit and continues to build on 30 years of success.
Help us write the next chapter of the MSA Coalition’s history by making a tax-deductible donation today!