ACT for ALS Law Reauthorized by Congress

Congress has reauthorized the ACT for ALS, ensuring an additional $500 million in funding for ALS research and improving patient access to experimental treatments. The law was renewed in the Senate by unanimous consent on September 28, just before its expiration deadline.

The years of work by I AM ALS and its advocates culminated in the bill's reauthorization. The organization was initially involved in drafting the ACT for ALS Act in 2021 to address significant gaps in access to investigational treatments. The reauthorization secures the law's continuation for five more years, supporting the scaling of research infrastructure and improved treatment access.

"Since my diagnosis almost nine years ago, our community has fought fiercely for change," said I AM ALS co-founder Brian Wallach. "Thanks to the leadership of the I AM ALS movement, federal research funding has grown exponentially, helping us get closer to a cure. We are deeply grateful to our champions in Congress and all the tireless advocates who ensured this vital bill was renewed."

The ACT for ALS has already invested hundreds of millions of dollars into ALS research and provided access to investigational treatments for over 800 patients who would not otherwise have qualified. The law has also built lasting infrastructure for future learnings. The organization ran an intensive campaign for reauthorization, including over 38,000 online actions and more than 95,000 emails in the final weeks.

The bill now awaits the President's signature. I AM ALS is calling on supporters to thank the Congressional champions who helped pass the legislation.