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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 Unanimous Senate Passage of the ACT for ALS Reauthorization Act
Washington, D.C., Wednesday, August 5, 2026 – The Muscular Dystrophy Association applauds the United States Senate for unanimously passing its version of the ACT for ALS (Accelerating Access to Critical Therapies for ALS) Reauthorization Act (S. 4472). MDA now urges both chambers to resolve the minor differences between both pieces of legislation and send a joint bill to the President’s desk as soon as possible.
Both versions of the bill reauthorize the landmark 2021 ACT for ALS, 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.
The Senate's unanimous support reflects the broad bipartisan commitment to improving the lives of people living with ALS and their families. Reauthorization of the ACT for ALS will help sustain the momentum created over the past five years, supporting faster therapeutic development while expanding access to care, services, and research opportunities for those facing this devastating disease.
ACT for ALS Reauthorization advances, but Congress’ job is not done
The Muscular Dystrophy Association is deeply grateful to the bipartisan champions in both the House and Senate, as well as the advocates, caregivers, researchers, clinicians, and families whose voices helped make today's action possible. Their leadership and persistence have ensured this vital legislation still remains on the path to full Congressional passage, which must be done before 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 unanimous Senate passage of the ACT for ALS Reauthorization Act sends a powerful message that people living with ALS remain a bipartisan priority. We are deeply grateful to our Senate champions and to every advocate whose voice helped move this legislation forward. But the job is not done yet. We hope Congress can swiftly send a joint bill to the President’s desk before the reauthorization of the 2021 legislation expires on October 1," 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. 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.
