Washington D.C. — The Accelerating Access to Critical Therapies (ACT) for ALS Reauthorization Act of 2026 (H.R. 8205) has achieved final congressional passage and is now on its way to the President's desk for signature. This crucial bipartisan legislation received approval from the U.S. House of Representatives and subsequently the Senate on September 28, 2026, ahead of the current authorization's expiration on September 30, 2026.
Once signed into law, the Act will extend key ACT for ALS programs through 2031, sustaining ongoing progress in ALS research, shared research infrastructure, and expanded access to investigational therapies for people with Amyotrophic Lateral Sclerosis (ALS). The reauthorization is also set to support work benefiting individuals with other rare neurodegenerative diseases.
The bipartisan effort for reauthorization was spearheaded by Representatives Mike Quigley and Ken Calvert in the House, and Senators Lisa Murkowski and Chris Coons in the Senate. Their leadership proved instrumental in guiding the legislation through Congress.
ALS Network, an organization deeply engaged in the reauthorization process, celebrated the final passage. The organization worked directly with congressional leaders and national partners to help shape and advance the legislation. This engagement included providing policy recommendations, bringing advocates to Capitol Hill, mobilizing the ALS community nationwide, and participating in congressional briefings and public events to support the reauthorization.
Sheri Strahl, MPH, MBA, president and CEO of ALS Network, underscored the urgency of timely reauthorization by joining congressional champions at a Capitol Hill press conference. Following the passage, Strahl stated that final congressional passage represents "a major win for people living with ALS and their families," highlighting it as a testament to the power of sustained, collective advocacy. Strahl also expressed gratitude for the role ALS Network played alongside partners across the ALS community, and specifically thanked Representatives Calvert and Quigley, Senators Murkowski and Coons, and every advocate whose persistence helped secure the legislation's passage.
The ACT for ALS program, initially established with a patient-centered approach, aims to accelerate progress on two vital fronts: advancing research and expanding access to investigational therapies for individuals who are unable to participate in traditional clinical trials. These programs are particularly significant for a rapidly progressive disease like ALS, where time is limited and effective treatment options remain few. The reauthorization is expected to prevent disruption to programs that support evidence-generating expanded access, natural history and biomarker research, shared data resources, and vital coordination across the ALS research community.
ALS Network extends special gratitude to the advocates within its community, including people living with ALS, their families, and caregivers across the country. Their sustained engagement, personal stories, numerous meetings, emails, phone calls, and heroic efforts were crucial in keeping the urgency of reauthorization before policymakers and in building the necessary bipartisan support for its final passage.
ALS Network, formerly known as ALS Golden West, partners with the ALS community to drive the discovery of prevention strategies, treatments, and cures for ALS. The organization also strives to provide access to quality care and connection, and to promote initiatives designed to improve health outcomes for those affected. The network serves people with ALS and their families throughout California, Hawaii, and beyond, and now looks forward to the President signing the reauthorization into law, ensuring this critical work can continue without interruption.