Two Dudes, One Goal: Podcast Hosts Kyle Bryant and Sean Baumstark Envision (Then Live) Life Beyond Circumstances

Sean Baumstark was 25 when he was diagnosed with Friedrich’s ataxia, a neuromuscular disease that affects the nervous system and heart and causes muscle weakness and ataxia, a loss of balance and coordination. “During my diagnosis,” Sean says, “the geneticist started talking about support groups and encouraging that I come to grips with what I . . .

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Creating a Network: How Hiring PCAs Gave Me Confidence and Independence, In College and Beyond

Josh Cueter, 22, from Troy, Michigan, is a 2020 graduate from Michigan State University.  At school he was a board member of the MSU Adaptive Sports & Recreation Club as well as MSU’s Council of Students with Disabilities.  After a semester internship with the Equal Employment Opportunity Commission in Washington, DC, Josh is currently working . . .

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What the COVID-19 Pandemic Can Teach Us About the Isolation Those Living With Neuromuscular Disease Experience Every Day

In March 2020, MDA asked our advocates how the novel coronavirus pandemic was impacting their lives. New Yorker Robert Paulson shared his story — and the universal truth about how neuromuscular disease (NMD), like COVID-19, creates isolation. But for those living with amyotrophic lateral sclerosis (ALS) and other forms of NMD, that isolation doesn’t always . . .

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Hacking COVID: MDA Staff Edition

In April, MDA fielded a survey to ask its community how COVID-19 was impacting their lives. We heard your responses — anxiety, questions, hope — and wanted to know more. In this six-part blog series, Hacking COVID, people from MDA’s community, all living with neuromuscular diseases, shared how they’ve altered their day-to-day lives, how they’ve . . .

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Hacking COVID: Voices from the Community, Part 3

In April, MDA fielded a survey to ask its community how COVID-19 was impacting their lives. We heard your responses — anxiety, questions, hope — and wanted to know more. In this six-part blog series, Hacking COVID, people from MDA’s community, all living with neuromuscular diseases, shared how they’ve altered their day-to-day lives, how they’ve . . .

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Hacking COVID: Voices from the Community, Part 2

In April, MDA fielded a survey to ask its community how COVID-19 was impacting their lives. We heard your responses — anxiety, questions, hope — and wanted to know more. In this six-part blog series, Hacking COVID, people from MDA’s community, all living with neuromuscular diseases, shared how they’ve altered their day-to-day lives, how they’ve . . .

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Hacking COVID: Voices from the Community, Part 1

In April, MDA fielded a survey to ask its community how COVID-19 was impacting their lives. We heard your responses — anxiety, questions, hope — and wanted to know more. In this six-part blog series, Hacking COVID, people from MDA’s community, all living with neuromuscular diseases, shared how they’ve altered their day-to-day lives, how they’ve . . .

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Amy and Jamie Shinneman Find Purpose on Their Way to the Bank of America Chicago Marathon

For the last four months, Amy Shinneman has been training to do something she never imagined doing: hitting the pavement as a participant in the Bank of America Chicago Marathon. Amy, a 45-year-old Noblesville, Ind., native, lives with Bethlem myopathy, a form of Ullrich congenital muscular dystrophy that causes muscle weakness throughout her limbs. “From . . .

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