Mike Bonner was diagnosed with probable Multiple System Atrophy (MSA) in December 2022 and subsequently referred to a local movement disorders clinic. The appointment was five months out, so his wife and he started researching online. Fortunately, they were referred to Mission MSA (then MSA Coalition). There, they learned about centers of excellence and the value of starting physical therapy and occupational therapy as early as possible.

Their self-advocacy and efforts to raise awareness of MSA started then. They were able to secure a referral to the closest center of excellence where he received a much more complete evaluation and eventually multidisciplinary care. His general practitioner made the referral for speech, OT, and PT. Although none of these professionals knew about MSA, they were willing to learn and adapt. With the help of Mission MSA, they were able to provide them with the information necessary to tailor therapy in a way that provides functional assistance for fighting the disease progression. He feels that each patient’s most important advocacy is with their own medical team and local community.

The other thing he learned through Mission MSA was the importance of clinical trials. He was fortunate enough to enroll in the Alterity ATH434 study at Vanderbilt University Medical Center, another Center of Excellence. Besides getting top-notch professional research care, he has since learned he was a beneficiary of the most effective treatment condition. He will now do what he can to advocate for widespread availability of this disease-modifying drug.

Direct Mission MSA advocacy efforts have included participating in two patient panel presentations over the internet, most recently the 2024 MSA Awareness Month Patient Panel. He is participating in the 2025 International MSA Congress Patient Panel. He was involved in the early planning for the 2023 Patient and Family Conference. He participated in the documentary Viewpoint with Dennis Quaid – Raising Awareness in Rare Diseases about MSA, which hopefully will lead to greater global awareness. He also had the pleasure to travel to Chicago to participate in the Path to a Cure 5k Mission MSA fundraising walk, where he was joined by his family. His son wasn’t able to join them in Chicago but walked 5k at his home in Sioux Falls. Thanks to his daughter’s organization and promotional efforts, their team raised the most money for the Chicago location.