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Our mission is to empower people living with neuromuscular diseases to live longer, more independent lives.
ACT for ALS Reauthorization Advances to the President After Today’s Senate Action
Washington, D.C., Monday, September 28, 2026 – The Muscular Dystrophy Association applauds the United States Senate for passing the House’s version of the ACT for ALS (Accelerating Access to Critical Therapies for ALS) Reauthorization Act. With this action, Congress has enacted the legislation, sending it to the President’s desk for final signature. The ACT for ALS Reauthorization Act will extend the landmark 2021 legislation, ensuring continued access to promising experimental treatments, advancing critical research, supporting innovative clinical trial approaches, and strengthening the infrastructure needed to accelerate therapies for amyotrophic lateral sclerosis (ALS) and other rare neurodegenerative diseases.
Today’s Senate action demonstrates that bipartisan support for the ALS community remains strong. Reauthorization of the ACT for ALS will help sustain the momentum created over the past five years and continue supporting faster therapeutic development and greater opportunities for people living with ALS.
MDA is deeply grateful to the bipartisan champions in Congress and to the advocates, caregivers, researchers, clinicians, and families whose persistence helped bring this legislation to this point. We urge the President to quickly sign the legislation into law before the current authorization expires on October 1, 2026.
Every person living with ALS deserves the opportunity to live with dignity, independence, and access to the care, research, and support they need throughout every stage of their journey. Since the 1950s, when Eleanor Gehrig championed MDA’s earliest work to find treatments and cures for ALS, MDA has helped build the research, care, and advocacy infrastructure that continues to drive progress for the ALS community today.
“Today’s Senate passage brings the ALS community one important step closer to securing the continued progress made possible by the ACT for ALS. We are grateful to the bipartisan members of Congress who have championed this legislation and urge the President to sign the bill into law before October 1. For people living with ALS, continued momentum matters,” said Sharon Hesterlee, PhD, 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. For questions regarding our advocacy work or policy positions, contact advocacy@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.
