Quigley's Bill Reauthorizing the ACT for ALS Passes the Senate

Yesterday, the Senate passed the Access to Critical Therapies for ALS Reauthorization Act (ACT for ALS Reauthorization Act) of 2026 with bipartisan support. Led by Representatives Mike Quigley (IL-05) and Ken Calvert (CA-41) in the House and Senators Lisa Murkowski (R-AK) and Chris Coons (D-DE) in the Senate, the ACT for ALS Reauthorization Act will renew programs from the 2021 ACT for ALS, which advanced scientific understanding of neurodegenerative diseases and helped people living with ALS access promising new treatments. 

“Since 2021, the ACT for ALS has helped thousands of Americans access the promising treatments and research they need,” said Rep. Mike Quigley (IL-05), lead sponsor of the bill. “But there is still no cure for ALS, making it a 100% fatal disease. We need the federal government to reauthorize the ACT for ALS immediately to continue funding ALS research. I’m proud of my colleagues in the Senate for passing this bill and continuing our work."

The ACT for ALS Reauthorization Act will also codify the Department of Health and Human Services’ (HHS) interpretation of Expanded Access Program eligibility guidelines and require the FDA to create a new 5-year Action Plan for rare neurodegenerative diseases.

This legislation has been endorsed by I AM ALS, the Muscular Dystrophy Association, the ALS Association, and the ALS Network.

“Since my diagnosis almost nine years ago, our community has fought fiercely for change,” said I AM ALS co-founder Brian Wallach. “Thanks to the leadership of the I AM ALS movement, federal research funding has grown exponentially, helping us get closer to a cure. We’re deeply grateful to our champions in Congress—including cosponsors Senators Coons (D-DE) and Murkowski (R-AK) and Representatives Quigley (D-IL-05) and Calvert (R-CA-41)—and all the tireless advocates who made sure this vital bill was renewed.”

“ACT for ALS Act was built on a simple but powerful idea: that patients, clinicians, researchers, industry, academia, and government can accomplish more together than any could alone,” said Troy Fields, volunteer co-chair of the I AM ALS legislative affairs team, and person living with ALS. “The campaign to reauthorize the Act embodied that same spirit. It brought together an entire community—united by one purpose, driven by one mission, and determined to ensure that hope continues to reach every person living with ALS.”