House passes ALS research law renewal as Senate faces deadline

The U.S. House passed the ACT for ALS Reauthorization Act of 2026 on July 23, 2026, keeping pressure on the Senate to extend a program that supports investigational therapies and ALS research infrastructure. ALS United says a lapse after Sept. 30 could disrupt access for patients and slow ongoing research.

Why it matters: - The ACT for ALS reauthorization would keep federal support in place for people living with ALS who need access to investigational therapies. - The legislation also underpins shared research tools that help move ALS treatments forward faster. - If Congress misses the deadline, expanded access programs and research infrastructure could be disrupted.

What happened: - The U.S. House of Representatives passed the ACT for ALS Reauthorization Act of 2026 (H.R. 8205) on July 23, 2026. - ALS United backed the vote and urged the Senate to act before the current authorization expires on Sept. 30, 2026. - The Senate companion bill, S. 4472, was introduced by Sens. Lisa Murkowski and Chris Coons and cleared the Senate Health, Education, Labor, and Pensions Committee by unanimous voice vote on June 17.

The details: - ACT for ALS, first enacted in 2021, has supported shared data platforms, natural history studies, biomarker efforts and drug-development tools. - The law also funds NIH Expanded Access Programs for people with ALS who cannot enroll in traditional clinical trials. - Those programs let patients pursue investigational therapies while contributing evidence that can inform future research and regulatory decisions. - ALS United said the House vote reflects months of advocacy that brought people living with ALS into congressional offices through Hill Days and committee meetings. - Jerry Dawson, ALS United president and CEO, said the Senate needs to move with the same urgency because people living with ALS do not have time to wait. - ALS United thanked Reps. Mike Quigley and Ken Calvert, bipartisan House members and advocates across the ALS community for helping advance the bill.

Between the lines: - The House vote is a strong signal of bipartisan support for keeping ALS research and access programs intact. - The remaining risk is timing. Even with committee approval in the Senate, floor action still needs to happen before the Sept. 30 deadline. - A lapse would not just affect policy. It could interrupt patient access and slow the research pipeline at a critical moment.

What's next: - The Senate must pass its companion bill and send the reauthorization to the President’s desk. - ALS United is pressing lawmakers to act quickly so patients do not lose access and research sites can maintain momentum. - If Congress acts on time, the ALS field can keep building the coordinated infrastructure needed to develop effective treatments.