I AM ALS Movement Collects More Than 20,100 Petition Signatures Urging Congress to "Finish the Job" and Reauthorize ACT for ALS Before September 30 Deadline

During their annual Week of Impact and with just days left before expiring, I AM ALS advocates across the U.S. demand swift action to renew historic legislation

WASHINGTON, Sept. 16, 2026 /PRNewswire/ -- More than 20,100 Americans signed a petition asking Congress to reauthorize the Accelerating Access to Critical Therapies (ACT) for ALS law before the law expires on September 30. The petition—organized by I AM ALS, the largest community movement to end ALS—reflects mounting urgency across the ALS community. Prominent voices carried the petition nationwide, including I AM ALS Ambassador Tanea "Rebel" Brooks, Katie Couric, and Rebecca Gayheart Dane, continuing Ambassador Eric Dane's fierce advocacy for this bill.

First signed into law in 2021, ACT for ALS established groundbreaking programs to advance progress in ALS research and treatment access, including promising therapies for those who can't access clinical trials, and a robust national research infrastructure. Without reauthorization, advocates warn of disruptions in progress and care for patients who are currently relying on treatments. In some cases these treatments are delaying or regressing symptoms, buying precious time.

"ALS quickly and relentlessly takes away a person's ability to move, speak, eat, and ultimately breathe," the letter with petition signatures says. "For people living with this disease and the families who love them, days, weeks, and months matter. Every unnecessary delay costs time they simply do not have to spare."

The petition, which captured more than 20,100 signatures across the country in only four days, calls on Congressional leadership and members of the Senate HELP Committee and House Energy and Commerce Committee to ensure reauthorization before the deadline "in order to avoid any potential interruption to these critical programs." The signatures represent Americans living with ALS, their caregivers, researchers, clinicians, and those impacted by the disease. I AM ALS continues to power the national campaign for reauthorization and encourage constituents to lend their voice with this form to contact their members of Congress.

Take Action: Contact your senators and representatives at bit.ly/fundALS

SOURCE I AM ALS