ACT for ALS

The Accelerating Access to Critical Therapies for ALS Act was signed into law on December 23, 2021.

This bill will establish:

(1) An Expanded Access grant program that funds research on and provides access to promising investigational treatments to people living with ALS who are not eligible for clinical trials.

(2) A public-private partnership for rare neurodegenerative diseases jointly led by the Food and Drug Administration (FDA) and the National Institutes of Health (NIH). This will be the first federal effort explicitly charged with speeding the development and approval of therapies for ALS and other rare neurodegenerative diseases.

(3) A rare disease grant program at the FDA that will fund research on and development of interventions to prevent, diagnose, treat or cure ALS and other rare neurodegenerative diseases.

Media Contact: Theresa Garner, theresa@iamals.org

117th Congress Reintroduction:

• I AM ALS, The ALS Association and the Muscular Dystrophy Association ask Congress to fully fund ACT for ALS for fiscal year 2022 and 2023.
• President Biden signs ACT for ALS into law. A joint statement from I AM ALS, The Muscular Dystrophy Association, and The ALS Association. Press release here from House E+C committee Republican leader Representative McMorris Rodgers and Health subcommittee Republican leader Representative Guthrie.
  • Watch President Biden’s remarks
  • Read President Biden’s remarks
• Senate unanimously passes ACT for ALS. Press release here from bill co-sponsor Senator Coons and press release here from bill co-sponsor Senator Murkowski. (video)
• House of Representatives passes ACT for ALS. Press release from the bill co-sponsors Congressman Quigley and Fortenberry can be found here. 
• Full House Energy and Commerce Committee passes ACT for ALS giving it the opportunity to be put to the full House of Representatives for a vote (video)
• House Energy and Commerce Health Subcommittee unanimously passes ACT for ALS and it moves to be voted on in the full committee (video)
• 44 ALS providers, practitioners, scientists, researchers, administrative staff and others come together to support ACT for ALS
• I AM ALS, the ALS Association and MDA call on Congress to quickly pass ACT for ALS
• Press release from the original cosponsors of the House and Senate bill
• A joint statement from I AM ALS, the Muscular Dystrophy Association, and the ALS Association

Previous ACT for ALS Updates:

• Press release from the original cosponsors of the House and Senate bill
• Congressman Fortenberry’s press release released after the bill was reintroduced
• A joint statement from I AM ALS, the Muscular Dystrophy Association, and the ALS Association
• What is new in the reintroduction of the bill
• I AM ALS’ original press release when the bill was first introduced in the house
• House ALS Congressional Caucus supports ACT for ALS
• Congressman Fortenberry and Congressman Quigley introduce ACT for ALS