The MSA Coalition (Formerly the Shy-Drager MSA Support Group)
History Of MSA
The Multiple System Atrophy Coalition® was originally named the Shy-Drager MSA Support Group and was founded in 1989 by Dorothy Trainer-Kingsbury, whose husband suffered from the disease, and Dr. David Robertson, who remains a board member and member of the Scientific Advisory Board.
The initial goal of the group was to provide a forum for patients and their caregivers to interact with others dealing with the same horrible disease. Through the efforts of Dr. David 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 line and also began to host an annual patient/caregiver meeting.
Until 1999, the annual meeting was held at the same time and location as the American Autonomic Society (AAS) meeting. The association with the AAS allowed the Support Group to provide interaction between the patients and the researchers studying the disease. Perhaps more importantly, the 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.
In 1999, Dorothy Trainer-Kingsbury retired from the group. Her obvious successor was Donald Summers, whose wife had Shy-Drager. Don, thankful for the assistance he received from Dorothy’s efforts, stayed active with the group after the passing of his wife in 1995, when stepped in as President.
As President of the support group, Don added some fresh enthusiasm to the organization. Under his direction, the toll-free line was revitalized and Don personally spoke with all who need help.
One of Don’s biggest achievements as President was securing 501(c)(3) status for the organization in June of 2004. To accomplish this task, Don recruited the help of another Board member, Don Crouse to write a business plan for the organization and to establish corporate bylaws. Securing the 501(c)(3) designation had an immediate impact on grass root donations.
In 2010 Don Summers retired from the SDS/MSA Support Group and Vera James and Judy Biedenharn were elected as the new co-Presidents. Since 2010, the SDS/MSA Support Group has grown thanks to an increased Internet presence and a new dedication by the expanded Board of Directors to establish the group as the premier charitable organization dedicated to Multiple System Atrophy. With increased revenue from grassroots donations and support from the pharmaceutical industry the Board has expanded its activities from being a patient/caregiver support group, to also supporting education, advocacy and research funding for Multiple System Atrophy.
In January of 2013, to reflect its new four pillar 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. Today, the MSA Coalition is executing its new mission by supporting educational initiatives to help physicians make an earlier diagnosis, participating in Capitol Hill events to raise awareness for MSA and Rare Disease issues, leading and participating in MSA Awareness Month activities, and building a substantial MSA Research fund to eventually find a cause and a cure for Multiple System Atrophy.