Congress sends ACT for ALS reauthorization to the president

ALS United celebrated final congressional passage of the ACT for ALS Reauthorization Act of 2026, which extends federal ALS research and expanded-access programs through fiscal 2031. The bipartisan bill now goes to the president’s desk after House and Senate approval, aiming to keep therapy development and investigational treatment access moving for people living with ALS.

Why it matters: - The reauthorization keeps federal ALS programs alive through fiscal year 2031. - The legislation extends support for new therapy development and access to investigational treatments for people who cannot join traditional clinical trials. - The measure preserves a 2021 federal framework that also supports shared research infrastructure, natural history and biomarker work, data resources, and expanded-access programs.

What happened: - The Senate passed the ACT for ALS Reauthorization Act of 2026 on Sept. 29, completing congressional action. - The bill now heads to the president for signature. - The Senate action approves H.R. 8205, which the House passed in July. - The Senate passed its own version of the legislation in August. - ALS United marked the vote as a win for the ALS community and its advocates.

The details: - ACT for ALS was first enacted in 2021. - The law was designed to speed development of new ALS therapies. - The law also expands access to investigational treatments for patients excluded from standard clinical trials. - ALS United said its member organizations helped drive the reauthorization effort through meetings on Capitol Hill, district visits, a congressional briefing, and outreach to House and Senate committees. - More than 50 advocates joined ALS United members for Hill Day in May. - Grassroots advocacy continued throughout the legislative process. - Jerry Dawson, ALS United president and CEO, said people living with ALS, families, caregivers, researchers, clinicians, advocates, and member organizations helped carry the bill across the finish line. - Dawson also thanked Sens. Lisa Murkowski and Chris Coons and Reps. Mike Quigley and Ken Calvert for bipartisan leadership.

Between the lines: - The reauthorization signals continued bipartisan interest in ALS policy, even as Congress moves to a new authorization window through 2031. - ALS United’s role shows how patient advocacy groups can shape niche biomedical legislation by pairing Washington lobbying with local constituent pressure. - The bill’s emphasis on expanded access matters because many people living with ALS are not eligible for conventional clinical trials.

What's next: - ALS United said it will keep working with member organizations, coalition partners, researchers, clinicians, and families to sustain the programs. - The organization also plans to support new grant and research opportunities built on ACT for ALS. - The president’s signature would formally enact the reauthorization and keep the federal programs operating into the next decade.

The bottom line: - Congress has cleared a major ALS-focused research and access bill, setting up continued federal support for patients and scientists through 2031.