I AM ALS COMMUNITY POWERS HISTORIC REAUTHORIZATION OF ACT FOR ALS

Community Advocates—Including Co-Founders Brian Wallach and Sandra Abrevaya, and I AM ALS Ambassadors Late Actor Eric Dane and Former Pro Wrestler Tanea "Rebel" Brooks—Drive Landmark Win Securing $500 Million in Funding and Therapy Access, and a Continued Path to for a Cure

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WASHINGTON, Sept. 29, 2026 /PRNewswire/ -- I AM ALS and its national force of advocates are celebrating as ACT for ALS reauthorization passed Congress on September 28. The Senate passed the ACT for ALS by unanimous consent, with just 24 hours left until the law expired, even after the House went home early. It's now on the way to the President's desk for signature. The I AM ALS community first identified a major gap in access to investigational treatments and co-authored the original ACT for ALS Act to address it in 2021. Now, with years of success underway, the law has five more years to scale research infrastructure and treatment access, representing an investment of up to an additional $500 million for ALS.

"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're deeply grateful to our champions in Congress—including cosponsors Senators Coons (D-DE) and Murkowski (R-AK) and Representatives Quigley (D-IL-05) and Calvert (R-CA-41)—and all the tireless advocates who made sure this vital bill was renewed."

Today's triumph is historic, but not without significant effort. Since ACT for ALS was first signed into law, I AM ALS has monitored and reported on the ground-breaking success of its implementation. Leading into the reauthorization year, I AM ALS built and deployed a comprehensive, multi-pronged advocacy campaign, including:

• Building and strengthening relationships with Congressional champions,
• Deploying a vast grassroots army of volunteer leaders from across the country,
• Partnering with researchers, other organizations, and celebrity ambassadors—most notably the late actor Eric Dane and professional wrestler Tanea "Rebel" Brooks—to strengthen and amplify our message, and
• Engaging with top experts in government affairs and public relations.

This year alone, I AM ALS held more than 430 in-person and virtual advocacy meetings and calls, secured more than 38,000 online actions, sent more than 95,000 emails, and gathered more than 20,100 petition signatures in the final weeks before expiration in order to ensure the bill was reauthorized before September 30, 2026. 

Unlike any other legislation the neurodegenerative landscape has ever seen, ACT for ALS has already invested hundreds of millions of dollars into ALS research, provided investigational therapy access for more than 800 patients who would not otherwise have qualified, and built lasting infrastructure for future learnings.

"ACT for ALS Act was built on a simple but powerful idea: that patients, clinicians, researchers, industry, academia, and government can accomplish more together than any could alone," said Troy Fields, volunteer co-chair of the I AM ALS legislative affairs team, and person living with ALS. "The campaign to reauthorize the Act embodied that same spirit. It brought together an entire community—united by one purpose, driven by one mission, and determined to ensure that hope continues to reach every person living with ALS."

"Since 2021, the ACT for ALS has helped thousands of Americans access the promising treatments and research they need," said Rep. Mike Quigley (IL-05), lead sponsor of the bill in the House, along with Ken Calvert (CA-41). "But there is still no cure for ALS, making it a 100% fatal disease. We need the federal government to reauthorize the ACT for ALS immediately to continue funding ALS research. I'm proud of my colleagues in the Senate for passing this bill and continuing our work."

"The passage of the ACT for ALS Reauthorization Act is a renewal of Congress's commitment to finding cures and treatments for ALS," said Rep. Calvert. "As a Co-Chair of the bipartisan ALS Caucus, I know just how hard those impacted by ALS have worked to get this bill across the finish line and I applaud their tireless advocacy. As anyone in the ALS community knows, tough days lie ahead, but the passage of the ACT for ALS Reauthorization is a good day full of hope and a pledge to stand together to fight this terrible disease."

The bill now awaits the President's signature. I AM ALS is now calling on supporters to thank the Congressional champions who helped pass this legislation at bit.ly/A4A-TY

About I AM ALS

I AM ALS is a nonprofit organization leading what STAT News called the most successful patient advocacy campaign this century. We built a community movement to harness collective power and find treatments and a cure for ALS faster, while also creating lasting, systemic change. Our focus is on three areas:

• Advocating for federal policy change to drive research, support, and treatments for ALS.
• Improving quality of life by providing volunteer and support opportunities to advocates and people living with ALS.
• Mobilizing and empowering advocates to raise awareness about ALS and other neurodegenerative diseases, and increase visibility of the ALS experience.

Learn more at www.iamals.org

SOURCE I AM ALS