On Sept. 28, 2026, Congress passed the ACT for ALS Reauthorization Act, extending critical research and expanded access programs through 2031. The bill now heads to the President’s desk to be signed into law.
Since its enactment in Dec. 2021, ACT for ALS has strengthened research infrastructure, improved coordination across federal agencies, and expanded access to promising therapies. It has helped build a national research ecosystem through initiatives like the ALS Knowledge Portal, the ALL ALS Consortium, and FDA’s Rare Neurodegenerative Disease Grants Program — enabling scientists to share data, identify new treatment targets, and increase clinical trial participation. With this reauthorization, the last five years of progress can continue.
We are deeply grateful to the advocates, ALS organizations, researchers, clinicians, and bipartisan congressional champions who worked together to get this across the finish line.
We especially thank Rep. Mike Quigley, Rep. Ken Calvert, Sen. Lisa Murkowski, and Sen. Chris Coons for their leadership and commitment to the ALS community.
Today, we celebrate what we accomplished together. Tomorrow, we keep building on that progress.
