learning center
About Us
For over 30 years, Mission MSA (formerly The MSA Coalition) has been a leading resource on multiple system atrophy. Learn more about us and gain insight into our vision, history, and unwavering dedication to the MSA community.
Mission & Vision
OUR MISSION
Mission MSA is devoted to improving quality of life and building hope for people affected by multiple system atrophy (MSA) through:
- Providing patients and care partners with trusted and compassionate emotional support.
- Educating patients, care partners, and healthcare professionals with credible, critically important, and relevant information.
- Building a sense of community by connecting and unifying people affected by MSA.
- Funding patient-centric collaborative research aimed at alleviating symptoms, slowing disease progression, and discovering a cure.
- Playing a leading role in raising awareness and advocating for those impacted by the disease.
Our Vision
Improve quality of life for the multiple system atrophy community by expanding access to care and support while advancing research toward treatment and a cure.
History of Mission MSA
Part 1: The Early Years
In 1989, the Shy-Drager Syndrome Support Group was founded by Dorothy Trainor-Kingsbury and Dr. Sterling Edwards to provide a community for those affected by the disease. Originally an informal organization, it aimed to offer support to patients and care partners. The first e-mail-based support group for MSA was established in 1995, marking a significant step in connecting individuals dealing with this rare neurodegenerative disorder. The group’s annual meetings provided a unique platform for patients and care partners to interact and share experiences, fostering a sense of community.
Part 2: Transition in Leadership
In 1998, Dorothy Trainor-Kingsbury retired, passing the torch to Don Summers, who became the president in 1999. Under his leadership, the organization underwent significant changes, including official incorporation in 1999 and achieving nonprofit status in 2004. Don Summers’s dedication and efforts secured the organization’s position as the first MSA charity in the U.S. to facilitate tax-deductible contributions. This period laid the foundation for future growth and impact.
Part 3: Honoring a Legacy
In 2010, Vera James and Judy Biedenharn were elected as co-presidents, succeeding Don Summers. The board expanded, and the organization continued its commitment to MSA research. Don Summers’s passing in 2013 led to the establishment of the Don Summers Memorial MSA Travel Award, encouraging early career investigators to study MSA. This period marked a transition towards a more research-focused approach.
Part 4: Transformation into The MSA Coalition
In 2012, Don Crouse played a pivotal role in transforming the SDS/MSA Support Group into The Multiple System Atrophy Coalition. The board, under the leadership of co-Presidents Judy Biedenharn & Vera James and Vice-President Don Crouse, shifted the focus to research grant funding, education, and advocacy. The organization expanded its board and established the MSA Research Grant Program. In 2013, the official name changed to The Multiple System Atrophy Coalition, reflecting its new mission and global outreach.
Part 5: Strategic Partnership and Growth
In 2020, The MSA Coalition announced a strategic partnership with MCI USA’s Association Solutions division. This major milestone for the organization shows its remarkable growth and expansion of service and programs to the multiple system atrophy community. With a dedicated team of nonprofit professionals, The MSA Coalition continued to support patients, care partners, and medical professionals on the frontlines of the battle against MSA.
Part 6: Becoming Mission MSA
In 2024, The MSA Coalition identified a strategic need to reflect a more accurate representation of its goals and values and renewed commitment to its mission. After extensive exploration of the organization’s strengths, weaknesses, and services through key stakeholder perspectives, The MSA Coalition announced a new name, Mission MSA, a modernized brand identity, and a state-of-the-art website with improved user experience to better serve the MSA community.
Latest Press Releases
Mission MSA Announces the 2023 MSA Centers of Excellence
Congress Introduces the National Plan to End Parkinson’s Act
The MSA Coalition Launches Advocacy Committee
The MSA Coalition Welcomes Joe Lindahl, MA, CAE as New Executive Director
The Multiple System Atrophy Coalition Announces a Groundbreaking Project to Explore the Genetics of MSA
Research Project Seed-Funded by MSA Coalition Awarded Additional Funding of 100,000 Euros from the Dr. Johannes and Hertha Tuba Foundation
Financial Documents
Full Filing 990 (2022)
Full Filing 990 (2021)
Full Filing 990 (2020)
Affiliated Organizations
Mission MSA proudly partners with these fine organizations to enhance, expedite, and continuously evolve our impact for the MSA community.