President Signs ACT for ALS Reauthorization Act into Law, Securing the Next Five Years of ALS Research, Innovation, and Access to Promising Therapies
MDA co-led advocacy efforts deliver major victory for the ALS community, ensuring continued momentum toward new
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Washington, D.C., Nov. 03, 2026 (GLOBE NEWSWIRE) — The Muscular Dystrophy Association (MDA) today celebrated the President’s signing of the ACT for ALS (Accelerating Access to Critical Therapies for ALS) Reauthorization Act into law, marking a substantial victory for people living with amyotrophic lateral sclerosis (ALS), their families, and the broader rare neurodegenerative disease community.
Championed by MDA alongside advocates, researchers, clinicians, industry leaders, and families across the country, the bipartisan legislation preserves one of the nation’s most important federal initiatives to accelerate the discovery, development, and delivery of new treatments for ALS and other rare neurodegenerative diseases. The law extends and improves critical programs that expand access to promising investigational therapies, strengthens research infrastructure, fosters innovative clinical trial approaches, and speeds the path toward more effective treatments, and ultimately cures.
For more than seven decades, MDA has helped build the foundation of today’s ALS research ecosystem through groundbreaking scientific investments, its nationwide network of multidisciplinary MDA/ALS Care Centers, and relentless advocacy in Washington. The ACT for ALS Reauthorization Act builds on that legacy by ensuring researchers, clinicians, and families have the resources and collaboration needed to continue transforming scientific discoveries into lifesaving therapies.
“Today’s signing is a defining moment for the ALS community and for everyone working toward a future without this devastating disease,” said Sharon Hesterlee, Ph.D., President and CEO of the Muscular Dystrophy Association. “The Muscular Dystrophy Association was proud to help lead the effort to reauthorize the ACT for ALS because we know that every day matters for people living with ALS. This law preserves the momentum that is driving scientific breakthroughs, expands opportunities for people to participate in research and access promising therapies, and strengthens the partnerships that will lead to the next generation of treatments. Together, we are creating a future where ALS is no longer a fatal diagnosis but a disease that can be effectively treated and ultimately cured.”
The ACT for ALS Reauthorization Act extends the groundbreaking law first enacted in 2021, which has helped reshape the landscape for ALS research by encouraging collaboration across government, academia, industry, and patient advocacy organizations. By continuing these critical programs, the law will help accelerate scientific discovery, improve clinical research, and bring promising therapies to people living with ALS and other rare neurodegenerative diseases faster.
“This victory belongs to every advocate, family member, researcher, clinician, and policymaker who refused to let progress stall,” said Paul Melmeyer, MPP, Executive Vice President of Public Policy and Advocacy at the Muscular Dystrophy Association. “For years, MDA has worked alongside Congress, federal agencies, and our partners across the ALS community to champion this legislation because we understand what is at stake. Reauthorizing the ACT for ALS means sustaining the research ecosystem, accelerating innovation, and giving people living with ALS greater hope that tomorrow’s treatments, and eventually cures, will arrive sooner.”
About ALS
Amyotrophic lateral sclerosis (ALS), sometimes referred to as Lou Gehrig’s disease, is a progressive neuromuscular disease affecting the nerves in the brain and spinal cord that control muscle movement. Over time, people with ALS experience a weakening of their muscles, which robs them of their ability to move, speak, eat, and eventually breathe. Symptoms of ALS usually begin in late middle age, but the disease can also impact younger adults. While the majority of ALS cases present with no family history, about 5 to 10 percent of cases are familial, suggesting a genetic factor. Military veterans and fire fighters have a significantly higher chance of getting ALS, nearly double that of the general population. There is currently no cure for ALS, however there are FDA approved treatments and a pipeline of treatments in clinical trials throughout the MDA/ALS Care Center Network. Learn more about MDA’s work in ALS here.
About MDA Advocacy
The Muscular Dystrophy Association is a nonpartisan 501(c)(3) organization. As strategic partners with the federal government, we work with public officials and administrations of all parties to advance policies that protect the rights, inclusion, dignity, and agency of people with neuromuscular disease. We do not endorse or support candidates or engage in political campaigns or activities. Join us at MDA.org/Advocacy to continue to defend access to care and services and to fight for robust neuromuscular disease research funding, independence, and community connection.
Media contact: press@mdausa.org
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 over 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, TikTok, LinkedIn, and YouTube.
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Mary Fiance, National Vice President, Strategic Communications Muscular Dystrophy Association press@mdausa.org
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