Pass the Act for ALS. Lives depend on it!

Members of the ALS communit are afraid. They fear that ACT for ALS reauthorization will not be signed into law in the 119th Congress. They fear that people will lose access to promising therapies that are keeping them alive. They fear the loss of collaboration and progress that we have made in ALS research. On September 30, critical programs and authorities established under the Accelerating Access to Critical Therapies for ALS Act (ACT for ALS) are set to expire. Congress has just weeks left to prevent an interruption in the progress this landmark law has made possible, and we are afraid that it will not happen in time. ACT for ALS is not just another bill. It has not simply delivered hope. It has put investigational drugs into patients’ bodies who could not otherwise access them. It has built a more coordinated, better-funded ALS research landscape than existed before it, generating valuable research data, strengthening collaboration across federal agencies and the ALS research community, and creating infrastructure designed to accelerate treatments for ALS and other rare neurodegenerative diseases. Letting this law lapse does not just pause progress. It could dismantle a system that is actively working, for people who are actively running out of time. Congress has already demonstrated that the bipartisan commitment behind ACT for ALS remains strong. The House and Senate have each unanimously passed legislation to reauthorize ACT for ALS. But the work is not finished. The two chambers passed different versions of the legislation. Until those differences are resolved and a final bill is sent to the president, ACT for ALS has not been reauthorized. Congress must pass the same bill. There are three ways this can be accomplished: -The Senate can pass the House version. -The House can pass the Senate version. -A separate negotiated or conferenced bill can be agreed upon and passed by both the House and the Senate. September 30 is not simply a legislative deadline. For the ALS community, this is a matter of actual life and death. The Expanded Access Programs in ACT for ALS provide treatments to people who otherwise would have no options and the research made possible by the bill is essential for creating a world without ALS. Finish the job. Pass ACT for ALS and send it to the president’s desk for signature. ALS quickly and relentlessly takes away a person’s ability to move, speak, eat, and ultimately breathe. 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. I urge you to ensure that ACT for ALS reauthorization is completed before September 30, 2026, in order to avoid any potential interruption to these critical programs. There should be no interruption. No momentum lost. No avoidable delay. For every person living with ALS today, for every family confronting this disease, and for everyone who will receive an ALS diagnosis tomorrow, the time to act is now. Pass ACT for ALS.