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Congress Extends ACT for ALS, Securing $500 Million for Research

With only 24 hours remaining before the original statute expired, the U.S. Senate passed the ACT for ALS reauthorization by unanimous consent. The legislation, which now heads to the President’s desk, guarantees five additional years of federal funding and continued access to investigational therapies for patients.

Congress Extends ACT for ALS, Securing $500 Million for Research
Photo: Bio & News

The renewal arrives after a high-stakes campaign led by the nonprofit I AM ALS, which mobilized thousands of volunteers to secure the bill's passage. Since its inception in 2021, the law has facilitated investigational treatment access for over 800 patients who otherwise lacked options. This new commitment unlocks up to $500 million to expand research infrastructure and keep the search for a cure at the forefront of the federal health agenda.

Brian Wallach, co-founder of I AM ALS, credited the victory to a massive grassroots effort that included more than 430 advocacy meetings and 95,000 emails sent to lawmakers in the final weeks. The legislative push drew support from a bipartisan coalition, including Senators Chris Coons and Lisa Murkowski, alongside Representatives Mike Quigley and Ken Calvert. For the families and patients navigating the realities of the terminal neurodegenerative disease, the reauthorization ensures that the collaborative model between clinicians, researchers, and government agencies remains intact.

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