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Our mission is to empower people living with neuromuscular diseases to live longer, more independent lives.
Statement from the Muscular Dystrophy Association on the House Passage of the ACT for ALS Reauthorization Act
Washington, D.C., Wednesday, July 22, 2026 – The Muscular Dystrophy Association applauds the House of Representatives for passing the ACT for ALS (Accelerating Access to Critical Therapies for ALS) Reauthorization Act, which reauthorizes the 2021 ACT for ALS. This impactful legislation will ensure continued access to promising experimental treatments, advance critical research, lead to the discovery of innovative approaches to clinical trials, and strengthen the infrastructure needed to accelerate the development of therapies and cures for amyotrophic lateral sclerosis (ALS) and other rare neurodegenerative diseases. This progress represents an important step toward easing the overwhelming emotional, physical, and financial burdens faced by people and families living with ALS. At the same time, it moves us closer to better treatments and, ultimately, a livable disease. Now that the House has passed the bill, advocates are invited to urge their Senators to support H.R. 8205 / S. 4472 and move the ACT for ALS Reauthorization Act forward without delay here.
We are grateful to the bipartisan champions, advocates, caregivers, and families who shared their stories and raised their voices to advance this legislation. Now, we urge the Senate to pass the ACT for ALS Reauthorization Act swiftly and send it to the President’s desk before authorization expires on October 1, 2026. Families facing ALS cannot afford delays in access to care, services, research, and support.
Every person living with ALS deserves the opportunity to live with dignity, independence, and access to the care and coverage they need throughout every stage of their journey. Since the 1950s, when Eleanor Gehrig championed our earliest work to find treatments and cures for ALS, MDA has created the trajectories and infrastructure that exist today in ALS research, care, and advocacy.
“Today's House passage of the ACT for ALS Reauthorization Act shows that the House of Representatives stands with the ALS and rare neurodegenerative disease communities in striving for better treatments and care. We are grateful to our champions Congressmen Quigley and Calvert, Congressmen Guthrie and Pallone for bringing the bill to the House floor, and every member of Congress who voted today for a brighter future for our community. MDA will not rest until this bill becomes law," said Sharon Hesterlee, Ph.D., President and CEO of the Muscular Dystrophy Association.
Media contact: press@mdausa.org.
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.
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.
