The ALS Association Supports Reintroduction of ACT for ALS Bill to Accelerate Treatments and Expand Access for People Living with ALS

Treatments Are Within Reach: Reintroduced ACT for ALS Bill Would Help Get Them to People Living with ALS Faster

ARLINGTON, Va., April 7, 2026 /PRNewswire/ -- The ALS Association today applauded the reintroduction of the Accelerating Access to Critical Therapies for ALS (ACT for ALS) Reauthorization Act (H.R. 8205), bipartisan legislation to extend and strengthen federal laws advancing ALS research and get effective therapies into the hands of people living with ALS.

We are closer than ever to changing the course of ALS, but progress must move faster to reach the people who need it most. Originally enacted in 2021, ACT for ALS has accelerated the development of new therapies, expanded access to investigational treatments, and strengthened coordination across the ALS research ecosystem. The reauthorization bill would extend these critical programs through 2031 and make them stronger – with more clinical trial accountability, greater transparency at the Food and Drug Administration, and a sharper focus on people living with ALS. These improvements were driven by the ALS Association and its dedicated advocates in the ALS community.

Calaneet Balas, President and CEO of the ALS Association, said: "ACT for ALS has already changed what's possible for people living with ALS – and our volunteers and staff fought to make this reauthorization even stronger. More accountability. Fewer barriers. Faster pathways to get promising treatments to the people who need them. This bill reflects what our advocates demanded and what people living with ALS deserve: a commitment from the federal government that matches the urgency of this disease."  

Faster drug development is critical in order to make ALS livable as we work toward a cure. Recent breakthroughs, like Qalsody®, the first drug to not just slow but potentially restore some lost function in people with SOD1-ALS, prove that changing the course of ALS is possible. But that breakthrough reaches only 2% of people living with ALS. For the other 98%, there is still no treatment that restores function. Closing that gap requires both bold federal policy and sustained investment in research, which is why the ALS Association is currently committing $39 million to more than 100 active grants and has launched the Accelerate the Cure campaign, with a goal of raising $1,000,000 to keep that momentum going.

Without reauthorization, key programs supporting research and expanded access to investigational therapies are set to expire in 2026, putting critical progress at risk precisely when researchers are closer to new treatments and cures than they have ever been.

The ALS Association urges Congress to act swiftly to pass the ACT for ALS Reauthorization Act and sustain the momentum toward making ALS livable and curing it. Every day matters for people living with ALS; they cannot afford to wait.

About the ALS Association  The ALS Association is the largest ALS organization in the world. The ALS Association funds global research collaborations, assists people with ALS and their families through its nationwide network of care and certified clinical care centers, and advocates for better public policies for people with ALS. The mission of the ALS Association is to make ALS livable and cure it. For more information about the ALS Association, visit our website at www.als.org. 

About ALSAmyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Over the course of the disease, people lose the ability to move, to speak, and eventually, to breathe. The disease is always fatal, usually within five years of diagnosis. Few treatment options exist, resulting in a high unmet need for new therapies to address functional deficits and disease progression.

SOURCE The ALS Association