ACT for ALS Reauthorization Passes Congress Unanimously

ACT for ALS reauthorization passed Congress on September 28, according to I AM ALS, the patient-led ALS advocacy organization. The Senate passed the bill by unanimous consent, with just 24 hours left until the law expired, even after the House went home early. The legislation is now on its 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. With years of success underway, the law now has five more years to scale research infrastructure and treatment access, representing an investment of up to an additional $500 million for ALS.

Prominent voices joined the nationwide call to action for ACT for ALS to be reauthorized, including I AM ALS Ambassador Tanea 'Rebel' Brooks, Katie Couric and Rebecca Gayheart, who continues the advocacy of late actor and I AM ALS Ambassador Eric Dane and his commitment to advancing the legislation and finding a cure.

'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.'

Since ACT for ALS was first signed into law, I AM ALS has monitored and reported on the implementation of the law. Leading into the reauthorization year, I AM ALS built and deployed a 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 the 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.

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 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. The organization built a community movement to harness collective power and find treatments and a cure for ALS faster, while also creating lasting, systemic change. Its 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.