Washington – September 18, 2026 -- More than 20,100 Americans signed a petition in just four days demanding Congress reauthorize the Accelerating Access to Critical Therapies (ACT) for ALS law before its September 30, 2026 expiration date.
Petition drive targets key congressional committees ahead of deadline
The campaign, organized by advocacy group I AM ALS during its annual Week of Impact, directs the petition at Senate HELP Committee and House Energy and Commerce Committee leadership. Signatories include patients living with ALS, caregivers, researchers, and clinicians who rely on programs the law established.
Law created national research infrastructure and expanded treatment access since 2021
ACT for ALS, first signed into law in 2021, built federal programs supporting ALS research and expanding access to experimental therapies for patients unable to enroll in clinical trials. Advocates say the legislation also funded a national research infrastructure now integral to ongoing trials.
Advocates warn lapse could halt therapies currently slowing disease progression
The petition letter states that ALS "quickly and relentlessly takes away a person's ability to move, speak, eat, and ultimately breathe," adding that delays cost patients time they cannot spare. Organizers warn that without reauthorization, patients currently receiving treatments that are delaying or reversing symptoms could face interrupted access.
Celebrity ambassadors amplified the campaign nationwide
I AM ALS Ambassador Tanea "Rebel" Brooks, Katie Couric, and Rebecca Gayheart Dane carried the petition across the country, continuing advocacy work started by Ambassador Eric Dane. The push comes as the September 30 statutory deadline leaves lawmakers a narrow window to act before existing programs lapse.