The ACT for ALS Reauthorization Act of 2026 (H.R. 8205 / S. 4472) has been introduced in the U.S. House and U.S. Senate, bringing us closer to reauthorizing a law that has made groundbreaking progress for those living with ALS and other rare neurodegenerative diseases and their families.

Since passage in December 2021, the ACT for ALS has:

• Supported approximately 750 community members with ALS through the National Institutes of Health (NIH) ALS Expanded Access program in receiving investigational treatments and equipped clinics nationwide to participate in ALS research.
• Created public-private partnerships that have already delivered advancements in understanding the natural history and progression of ALS as well as the development of new drug development approaches in ALS in other neurodegenerative diseases.
• Provided over $20 million in FDA grants for rare neurodegenerative disease research and commissioned a regulatory action plan from FDA to chart the way forward.

However, without congressional action, ACT for ALS programs will expire on October 1, 2026, threatening the progress made through the law so far.

Both the US House and US Senate have passed their own version of ACT for ALS Reauthorization, but they have minor differences between both bills. The next step is for both chambers to send a joint version to the President's desk before October 1! 

Urge your lawmakers to take the final steps and pass a final version of the ACT for ALS Reauthorization Act without delay! The ALS and neuromuscular disease communities cannot wait!