Calvert, Quigley Introduce Bill To Advance ALS Research and Keep Treatments Available

This week, Representatives Ken Calvert (CA-41) andMike Quigley (IL-05) introduced the Accelerating Access to Critical Therapies for ALS Reauthorization Act (ACT for ALS Reauthorization Act) of 2026. The ACT for ALS Reauthorization Act will help people living with ALS continue to access promising treatments and further advance the scientific understanding of neurodegenerative diseases. Today, the ACT for ALS Reauthorization Act was noticed for a hearing at the Energy and Commerce Health Subcommittee on April 15, 2026. 

“The ACT for ALS was a landmark law that gave hope to Americans impacted by ALS,” said Rep. Calvert. “It’s now critical that Congress builds upon that milestone by passing the ACT for ALS Reauthorization Act to continue our progress in researching cures and treatments. The courageous and extraordinary ALS advocates who helped us pass the ACT for ALS are a source of inspiration and the reason we have reached this moment. I appreciate the leadership of my fellow ALS Caucus colleague Rep. Mike Quigley in sponsoring this bill and working together with me to advance these bipartisan solutions.”

“Every dollar put towards ACT for ALS programs has improved our understanding of ALS and allowed people living with ALS to access promising treatments. We made great progress during the first five years of these programs, but ALS remains a 100% fatal disease. The federal government must continue supporting efforts to end this disease once and for all,” said Rep. Quigley. “The passage of ACT for ALS was one of the greatest accomplishments of my career. I am proud to work alongside Congressman Calvert, Senators Murkowski and Coons, and the incredible organizations fighting neurodegenerative diseases to ensure this work continues.” 

Quigley and Calvert’s legislation will reauthorize ACT for ALS programs for 5 years, codify the Department of Health and Human Services’ (HHS) interpretation of Expanded Access Program eligibility guidelines, require a new FDA 5-year Action Plan, and require a new GAO report on the implementation of ACT for ALS programs in 2030.

In the Senate, the ACT for ALS Reauthorization Act is led by Senators Lisa Murkowski (AK) and Chris Coons (DE).

“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 this bipartisan reauthorization bill.”

“ALS is indiscriminate and devastating. It can strike any of us—and it will take all of us working together to support those affected and help end this terminal disease,” said Senator Murkowski. “As an ALS Caucus Co-Chair, I’m honored to introduce the ACT for ALS Reauthorization, which will break down treatment barriers and accelerate the research and development of therapies for those living with ALS.”

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

“This bill is urgent - because ALS doesn’t wait, and neither can we,” said Andrea Goodman, CEO of I AM ALS. “Since 2021, ACT for ALS has driven historic progress: unlocking critical funding, expanding access to promising therapies, and accelerating the path toward a cure. The ALS community united to pass this landmark legislation once, and together with partners and advocates nationwide, we will do it again. We are deeply grateful to the I AM ALS volunteer community and to Representatives Quigley and Calvert for their leadership in reintroducing the bill and their commitment to progress.”

“Every day, we hear from individuals and families navigating the realities of ALS, where time is incredibly limited and options are few,” said Sheri Strahl, MPH, MBA, president and CEO of the ALS Network. “Families do not have the luxury of waiting. ACT for ALS has already helped lay the groundwork for a more coordinated and effective approach to ALS research and for expanded access to investigational therapies for those who cannot participate in clinical trials. Reauthorization is essential to sustaining this momentum and ensuring that people living with ALS have every possible opportunity for progress while the search for breakthroughs continues. We are grateful to Representatives Calvert and Quigley for their leadership in advancing this critical effort.”

“The ACT for ALS has become a real-world test of whether our research and regulatory systems can move at the speed our community needs. Early results are very encouraging, but reauthorization is necessary to truly fulfill its promise to our community. The legislation introduced this week is a chance to not only further accelerate our rare neurodegenerative disease drug development approach, but also to provide a blueprint for how rare disease innovation should work going forward,” said Sharon Hesterlee, PhD, President and CEO, Muscular Dystrophy Association.

"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," said Calaneet Balas, President and CEO of the ALS Association.

###