Washington, D.C., Oct. 21, 2025 (GLOBE NEWSWIRE) -- The Muscular Dystrophy Association (MDA) will bring nearly 100 advocates, scientists, and families living with neuromuscular diseases to Capitol Hill for MDA on the Hill, meeting with members of Congress to urge action on critical federal policies that impact access to care, research progress, and support for families.

Representing over 300,000 people in the U.S. living with neuromuscular diseases — and millions of family members, MDA’s delegation will focus on three urgent priorities that directly affect quality of life and long-term health outcomes:

• Protect NIH research funding, which has historically driven the discovery of life-changing therapies and cures.
• Cosponsor the ABC Act (Alleviating Barriers for Caregivers), which aims to simplify administrative processes for family caregivers.
• Reauthorize Enhanced ACA Premium Tax Credits, ensuring affordable healthcare coverage for people, including those with chronic and progressive conditions such as neuromuscular disease.

“For 75 years, the Muscular Dystrophy Association has driven progress for more than 300 neuromuscular diseases — but that progress depends on strong public policy,” said Mark Fisher, Director, Advocacy Engagement, MDA. “Protecting NIH research funding ensures that breakthroughs continue. Easing the burdens for caregivers through the ABC Act recognizes the essential role of families in care. And reauthorizing Enhanced Affordable Care Act Premium Tax Credits keeps vital treatments within reach. Every moment matters in the fight against muscle loss. Time is muscle, and we can’t afford to wait.”

“Time is everything for families living with neuromuscular disease,” said Sharon Hesterlee, PhD, interim President and CEO of the Muscular Dystrophy Association. “Every advance in research, every policy that expands access to care, and every effort that strengthens support for caregivers adds time. Time to live more independently. Time to pursue goals and dreams. Time for life itself. That is what drives the Muscular Dystrophy Association’s work on Capitol Hill.”

Voices of Advocates for the MDA Community

“I’m studying to cure the very condition I live with — congenital muscular dystrophy,” said Justin Moy, Alumni MDA National Ambassador and Ph.D. candidate, Boston University. “The NIH funding MDA is fighting to protect fuels the discoveries that make my research possible. Without it, the hope for treatments slows. Every moment matters in the fight against muscle loss.”

“Living with Charcot-Marie-Tooth disease, I’ve seen how healthcare coverage can be the difference between independence and limitation,” said Lily Sander, MDA National Ambassador and advocate for equality. “That’s why protecting the Enhanced ACA Premium Tax Credits matters — it keeps essential therapies accessible and affordable for people like me. I’m proud to speak up for everyone navigating life with CMT and other neuromuscular conditions.”

“MDA Summer Camp taught me to be brave — and now I’m taking that courage to Capitol Hill,” said Faith Fortenberry, Alumni MDA National Ambassador living with spinal muscular atrophy (SMA). “I want lawmakers to know that access to healthcare and caregiver support aren’t luxuries; they’re what makes it possible for people like me to live longer, more independent lives. The confidence I gained through the Muscular Dystrophy Association community is why I believe my voice can make that future happen.”

For 75 years, MDA has been at the forefront of accelerating research, advancing care, and empowering individuals with neuromuscular diseases to live longer, stronger lives. MDA Hill Day continues this legacy, ensuring that the voices of people living with these conditions are heard by those shaping the policies that affect their futures.

Media Contact press@mdausa.org.

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About Muscular Dystrophy Association
Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and over 300 other neuromuscular conditions. For 75 years, MDA has led the way in accelerating research, advancing care, and advocating support and inclusion of families living with neuromuscular disease. MDA's mission is to empower the people we serve to live longer, more independent lives. To learn more visit mda.org and follow MDA on Instagram, Facebook, X, Threads, Bluesky, TikTok, LinkedIn, and YouTube.

About Muscular Dystrophy Association’s 75^th Anniversary
In 2025, the Muscular Dystrophy Association proudly marks 75 years of legacy, impact, and momentum in the fight against neuromuscular diseases. Since our founding, MDA has been at the forefront of research breakthroughs, providing access to comprehensive care, and championing the rights of people living with muscular dystrophy, ALS, and over 300 other neuromuscular diseases. This milestone has been made possible by generations of dedicated support from people living with neuromuscular disease, their families, researchers, clinicians, volunteers, and donors—who boldly drive our mission forward. As we look ahead, we remain committed to honoring this legacy, building on the impact we’ve made together, and continuing our momentum toward transformative progress for people living with neuromuscular disorders. Learn more at MDA75.org. 

Attachments

• Photo: MDA Advocates on Capitol Hill in 2024.
• Photo: Lily Sander, MDA National Ambassador meets with her representative in 2024.

Mary Fiance, National Vice President, Strategic Communications
Muscular Dystrophy Association
press@mdausa.org