The ALS Association Helps Secure Landmark Reauthorization of ACT for ALS

Legislation championed by the ALS Association alongside bipartisan partners in Congress will extend ALS research and treatment access programs through 2031

ARLINGTON, Va., Sept. 29, 2026 /PRNewswire/ -- The ALS Association celebrates the reauthorization of ACT for ALS, which was passed by Congress today.

This is a milestone the organization helped drive on Capitol Hill and in the community. The reauthorization extends the research and treatment access programs established by the original ACT for ALS through 2031, keeping the momentum moving toward a cure.

The ALS Association mobilized advocates across all 50 states and worked directly with partners on both sides of the aisle to shape and strengthen the bill, grounding it in what persons living with ALS and families told the organization every day: move faster, cut the barriers, and generate evidence that turns promising science into proven treatments. Their tireless advocacy helped shape this bill that will speed the development of effective therapies for people living with ALS while ensuring accountability and transparency every step of the way.

"We must accelerate research and technology to help make ALS livable and cure it," said Calaneet Balas, president and CEO of the ALS Association. "ACT for ALS invests in that research, and it gives some people who can't join clinical trials a path to investigational therapies. Today, Democrats and Republicans came together to keep that progress going."

Since its initial passage in 2021, ACT for ALS has accelerated research into promising therapies and opened additional pathways for people living with ALS who cannot participate in clinical trials. The reauthorization builds on that foundation, keeping research at the center so the field can learn which treatments truly work and deliver them to everyone living with ALS. That focus, grounded in the priorities of people living with ALS and families, is why the ALS Association pushed so hard to get it right.

This is a significant victory for the ALS community that will sustain funding for research, support for families, and an unrelenting push to accelerate the development of effective treatments. This work was possible because of the organization's leadership, partners in Congress, and most of all, the efforts of our advocates who showed up, met with lawmakers again and again, and refused to let this deadline expire.

Balas added: "To every advocate who walked into a congressional office and wouldn't leave without a commitment: you did this. To the families who shared their hardest moments so other families might have more time: you did this. We're grateful to our champions on both sides of the aisle who helped make this legislation possible. People living with ALS cannot wait, and neither will we."

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 ALS Association is working to make ALS a livable disease while urgently searching for new treatments and a cure. For more information about the ALS Association, visit our website at www.als.org.

About ALS
Amyotrophic 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