The petition, gathered in just four days, underscores the urgency felt by a community facing a disease that strips away basic motor and respiratory functions. Supporters include public figures Katie Couric, Rebecca Gayheart Dane, and Tanea “Rebel” Brooks, all pressing for continuity in a program that has provided vital treatment pathways since its 2021 inception.

Legislators on the Senate HELP Committee and the House Energy and Commerce Committee face mounting pressure to prevent a lapse in funding and oversight. Advocates warn that any disruption to these programs would threaten the stability of current treatments that help patients manage symptoms. For those living with the disease, the legislative clock is not merely a bureaucratic hurdle but a matter of immediate survival.