Washington, D.C., Feb. 03, 2026 (GLOBE NEWSWIRE) — The Muscular Dystrophy Association (MDA) today applauded the bipartisan passage of the annual federal funding bill that sustains critical investments in biomedical research, rare disease infrastructure, and access to high quality healthcare that directly impact people and families living with neuromuscular diseases. MDA urges the President to sign the legislation into law swiftly.
The package reflects years of perseverance through advocacy by MDA families, clinicians, researchers, volunteers, and grassroots advocates working alongside MDA and includes:
- $48.7 billion for NIH, a 1% increase that helps sustain biomedical research critical to rare disease progress. The funding includes positive policy language limiting forward funding of grants and prohibiting arbitrary indirect cost caps, protecting funding that is essential for long-term research stability.
- $90 million in funding for ACT for ALS, ensuring continued implementation of this vital program designed to accelerate access to investigational therapies for people living with ALS. MDA has worked with bipartisan champions and coalition partners since the law’s passage to secure the funding needed to meet the urgency of the ALS community.
- Passage of the Accelerating Kids’ Access to Care Act addresses longstanding barriers that delay children with rare and complex conditions from accessing timely specialty care, an issue MDA advocates have elevated for years.
- The Give Kids a Chance Act, which reauthorizes the Rare Pediatric Disease Priority Review Voucher Program. Without action, the program was set to fully expire in October 2026. Since its inception in 2012, the RPD PRV program has helped incentivize the development of therapies for rare pediatric neuromuscular diseases, including Duchenne muscular dystrophy, spinal muscular atrophy, Friedreich’s ataxia, and TK2 deficiency—conditions that historically saw little therapeutic investment.
As a nonpartisan organization, MDA works across party lines to advance policies that strengthen research, care, and independence for people living with rare neuromuscular conditions. This bipartisan action by Congress reflects a shared commitment to ensuring progress continues for a community that has historically been underfunded and underserved. For families navigating rare neuromuscular diseases, federal investment, particularly through the National Institutes of Health (NIH), is essential to sustaining scientific momentum and translating discovery into real-world impact.
Sharon Hesterlee, PhD, President and CEO at MDA, said “For more than 75 years, the Muscular Dystrophy Association has helped build the foundation of this field—advancing research, expanding multidisciplinary care, and elevating patient voices. Federal funding is critical to maintaining that momentum. Together, these efforts have contributed to more than 30 FDA-approved treatments in just the past decade, demonstrating what’s possible when research, care, industry innovation, and the lived experiences of patients and families work in concert.”
The passage of this legislation is also a testament to the continuous advocacy of the neuromuscular disease community including families, clinicians, researchers, and advocates who have consistently engaged lawmakers to underscore what’s at stake.
That impact is deeply personal for advocates like Lily Sander, MDA National Ambassador, who lives with Charcot-Marie-Tooth disease for which there is no treatment. She has spent years urging policymakers to recognize the urgency of sustained investment in rare disease research. “This funding represents hope, not just for today, but for the future,” said Lily. “Families like mine have never stopped advocating because we know progress is possible. Seeing Congress come together in a bipartisan way shows that our voices matter and that change can happen when we refuse to give up.”
MDA also recognized the collective efforts of its grassroots advocates nationwide, whose ongoing engagement with congressional offices helped secure this outcome.
“This moment belongs to the hundreds of advocates in our community who never stopped showing up,” said Paul Melmeyer, MPP, Executive Vice President, Public Policy and Advocacy at MDA. “Their partnership with the Muscular Dystrophy Association, sharing their stories, educating lawmakers, and pushing for bipartisan solutions, helps ensure that people living with neuromuscular diseases can live longer, healthier, and more independent lives. Over the last five years, our advocates held over 250 meetings, sent over 7000 letters, and made dozens of phone calls asking for the passage of provisions in this bill”
MDA will continue working with policymakers, federal agencies, researchers, and industry partners to ensure these investments are implemented effectively and equitably, driving innovation forward while keeping patients and families at the center of every decision.
For more information on MDA’s advocacy efforts, visit MDA.org/Advocacy.
Media contact: [email protected]
About Muscular Dystrophy Association
Muscular Dystrophy Association (MDA) has been at the center of progress for people living with muscular dystrophy, ALS, and over 300 other neuromuscular conditions for 75 years. We unite researchers, clinicians, advocates, and families to speed the pace of discovery, improve access to expert care, and ensure inclusion in every aspect of life. Our mission is simple: give the people we serve the tools and opportunities to live longer, more independent lives. To learn more visit mda.org. Follow MDA on social media on Instagram, Facebook, X, Threads, Bluesky, TikTok, LinkedIn, and YouTube.
- Bipartisan Congressional Action Advances Critical Programs for Rare Neuromuscular Disease Research and Care