MDA Recognizes the Esteemed Members of Our Volunteer Advisory Committee

For over 70 years, the Muscular Dystrophy Association has led the way as the #1 Voluntary Health Organization in the U.S. for people living with neuromuscular diseases. Through volunteer committees, boards, community events, and Summer Camps where kids build confidence and independence, volunteers are tightly woven into MDA’s fabric. We could not build on our . . .

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Promoting Diversity in Rare Disease Research

Drug companies are developing more therapies for rare disease patients — and doing it faster — than ever before. But when it comes to enrolling minorities in clinical trials, the US track record is lagging behind. That subject was the focus of a March 15 session during the 2022 MDA Clinical & Scientific Conference in . . .

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Ensuring Economic Independence for the Neuromuscular Community

Did you know that according to a recent MDA survey, only 21% of adults living with neuromuscular disease are working part or full-time? Many individuals with disabilities have a desire to work but face employment hurdles, including the lack of wraparound support services, inaccessible workplaces, discriminatory wages, and a potential loss of Supplemental Security Income . . .

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Life-Saving PJ’s Protocol Was Inspired by a Person With DMD

At Daytona International Speedway, if you see a silver wheelchair-accessible minivan flash by outside the stadium, it’s shuttling people who need assistance getting around the expansive venue. Philip James “PJ” Nicholoff would be happy knowing that his family donated his beloved van to the speedway, and its back windows display signage honoring him. A big . . .

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MDA Declares 2022 The Year of Independence

For more than 70 years, the Muscular Dystrophy Association (MDA) has been committed to empowering people living with muscular dystrophy, ALS, and related neuromuscular diseases to reach their potential.  Through the decades, MDA has led the way through our innovations in care, research, and advocacy.   This year, we go bigger. In an interview with . . .

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Reflecting on our 2021 Advocacy Accomplishments

2021 was another challenging year for many, but once again, MDA’s grassroots advocates were relentless in ensuring lawmakers heard their voices. Throughout the year, our volunteers emailed, called, and met with important decision-makers urging them to act on vital public policy that will improve the lives of people living with neuromuscular disease and their families.  . . .

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MDA Helps Students and Teachers Achieve Success Together

It can be overwhelming for educators to learn the various challenges associated with neuromuscular diseases and to take those considerations into the classroom. The good news is that these students also come with their own unique set of deep strengths, and educators’ role in encouraging, supporting, and motivating them draws on many of the skills . . .

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Improving Air Travel for People Living with a Disability

Broken wheelchairs. Inaccessible seating. Hard to navigate aircraft. For too many in the neuromuscular community, traveling by air is not accessible. We sat down with Paul Melmeyer, MDA’s VP of Public Policy and Advocacy to hear about his recent appointment to the Air Carrier Access Act Advisory Committee and the Association’s work on accessible air . . .

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