Quigley, Calvert Legislation To Reauthorize ALS Research Funding Program Passes the House

On Wednesday, the House of Representatives voted on and 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), the ACT for ALS Reauthorization Act will further advance the scientific understanding of neurodegenerative diseases and help people living with ALS continue to access promising treatments. The bill previously passed through the Energy and Commerce Committee in May with zero ‘No’ votes.

“Over the past five years, the programs created by the ACT for ALS have helped thousands of people living with ALS and other rare neurodegenerative diseases access promising treatments and research. Today, the House of Representatives showed overwhelming support to continue funding those treatments and the vital research that makes them possible,” said Rep. Quigley. “I'm proud of my colleagues for supporting ALS research, and I want to thank Representative Calvert, Senator Murkowski, and Senator Coons for leading this fight with me.”

“As a Co-Chair of the bipartisan ALS Caucus, the effort to get the landmark ACT for ALS law across the finish line in 2021 was the result of the passion and determination of the ALS advocacy community,” said Rep. Calvert. “Working with my Appropriations Committee colleagues, the ALS Caucus, and ALS advocates, we have been successful at making historic investments into these programs. As families impacted by ALS know all too well, we have more work to do. That is why taking this step today, and reauthorizing the ACT for ALS Act, is essential. I want to thank Members of the ALS Caucus, including the bill’s sponsor Congressman Quigley, for their work. And I want to give my heartfelt appreciation, once again, to the ALS advocacy community and the families who have been forever changed by ALS.”

Quigley and Calvert’s legislation will reauthorize the programs started by the 2021 ACT for ALS Law for another five years. The bill 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.

The bill now awaits a vote in the Senate, where it is led by Senators Lisa Murkowski (AK) and Chris Coons (DE).

“It is great to see this legislation pass the House with strong bipartisan support, bringing this investment and resources one step closer to helping those impacted by ALS,” said Senator Murkowski. “Removing barriers to treatment, investing in resources, and working to develop therapies are critical as we work to understand this unforgiving disease. I look forward to working with my colleagues to get this bill across the finish line in the Senate and signed into law to deliver meaningful support to families as we continue the fight against ALS.”

“ALS is a disease that takes from us: it steals movement, communication, and tomorrows,” said Senator Coons. “ACT for ALS funds research to stop ALS from claiming more lives and futures, and to give hope and new treatments to those already fighting its cruelty. I am grateful to Senator Murkowski and Representatives Quigley and Calvert for their partnership on getting this bill through the House. I hope the Senate takes it up quickly.”

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

“Today's news is a lifeline for those living with ALS, for whom every day matters,” said I AM ALS CEO Andrea Goodman. “This community is counting on this funding for research and access to promising therapies. ACT for ALS has already built a system for research, provided access to promising treatments for almost 1,000 patients who wouldn’t have otherwise qualified, brought hope and attention to this devastating disease, and brought us closer than ever to a cure. We are so grateful to Rep. Mike Quigley for his unwavering support for the ALS community, from co-writing the original ACT for ALS Act to leading the charge to get this reauthorization to the House floor. We also thank Representative Ken Calvert and Representatives Morgan Griffith, Diana DeGette, Brett Guthrie, and Frank Pallone for their partnership, and Speaker Mike Johnson and Majority Leader Steve Scalise for prioritizing this vote. We're urging every member of the House to vote yes, and we won't stop pushing until this bill is signed into law.”

“Today's House passage of the ACT for ALS Reauthorization Act shows that the House of Representatives stands with the ALS and rare neurodegenerative disease communities in striving for better treatments and care. We are grateful to our champions Congressmen Quigley and Calvert, Congressmen Guthrie and Pallone for bringing the bill to the House floor, and every member of Congress who voted today for a brighter future for our community. MDA will not rest until this bill becomes law,” said Sharon Hesterlee, Ph.D., President and CEO of the Muscular Dystrophy Association.

“Today’s reauthorization of ACT for ALS keeps the momentum going toward defeating ALS. This is an investment in hope, innovation, and in the very people impacted by this disease. By extending these programs, Congress is reaffirming that people living with ALS cannot wait. This action will help drive the next generation of science, expand opportunities for participation in research, and bring us closer to making ALS livable until it is cured,” said Calaneet Balas, President and CEO, ALS Association.

“Today’s passage of the ACT for ALS Reauthorization Act is an important milestone for people living with ALS and their families,” said Sheri Strahl, MPH, MBA, President and CEO of ALS Network. “ACT for ALS has opened new pathways for research and access to investigational therapies, and this vote brings us one step closer to ensuring this important work can continue. We are deeply grateful to Representatives Quigley and Calvert for their bipartisan leadership and to the House for its continued support of the ALS community as we work toward final passage.”