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I AM ALS Community Celebrates ACT for ALS Reauthorization

On September 28, 2026, the I AM ALS community marked a significant milestone as the ACT for ALS reauthorization received unanimous approval from Congress. This landmark event indicates a strong commitment to enhance funding and accessibility for therapies in the fight against Amyotrophic Lateral Sclerosis (ALS), allocating an additional $500 million to support research and treatment initiatives.

Co-founders Brian Wallach and Sandra Abrevaya, along with prominent ambassadors like late actor Eric Dane and former professional wrestler Tanea "Rebel" Brooks, spearheaded the efforts to secure this essential legislation. The bill is now headed to the President for signature, ensuring continued progress in ALS research and treatment access for patients facing this devastating disease.

Since its inception, the I AM ALS community has tirelessly campaigned to close gaps in treatment access, initially identifying significant barriers to investigational therapies. The original ACT for ALS Act, co-authored in 2021, addressed these critical issues and has significantly increased research funding, allowing advancements in the quest for a cure.

"Since my diagnosis almost nine years ago, our community has fought fiercely for change, and today’s victory is a testament to that persistence," noted Wallach. He further expressed gratitude to congressional champions, including Senators Coons (D-DE) and Murkowski (R-AK), and Representatives Quigley (D-IL-05) and Calvert (R-CA-41) for their unwavering support.

The reauthorization of ACT for ALS isn't merely a renewal of existing legislation; it's indicative of the collaborative effort across various sectors, including patients, researchers, and lawmakers. By fostering partnerships and a unified advocacy approach, I AM ALS managed to execute an extensive campaign leading to this momentous outcome.

In the lead-up to the reauthorization, I AM ALS conducted a comprehensive advocacy campaign which included:

• - Building strong relationships with key members of Congress,
• - Mobilizing a dedicated grassroots movement,
• - Collaborating with researchers and influencers to amplify their message,
• - Engaging experts in public affairs for strategic guidance.

This year, the organization reported conducting over 430 meetings (both virtual and in-person), generating 38,000 online actions, dispatching more than 95,000 emails, and collecting over 20,100 petition signatures, all emphasizing the urgency of reauthorizing the ACT before the September 30 deadline.

Since the law's original enactment, it has facilitated access to investigational therapies for over 800 patients, significantly transformed the ALS research landscape, and laid the groundwork for future advancements in understanding the disease. Troy Fields, co-chair of the legislative affairs team at I AM ALS, emphasized the collective effort that made this possible: "The ACT for ALS Act embodies the power of collaboration among patients, scientists, and the government. The passage of the reauthorization reflects this unity and determination."

Despite the progress made, Representative Mike Quigley highlighted the ongoing challenges: "There is still no cure for ALS, making it a 100% fatal disease. It's vital that the federal government continues to prioritize funding for ALS research to develop effective treatments."

Recognizing the hard work and advocacy from the ALS community, Representative Calvert articulated, "The ACT for ALS Reauthorization Act symbolizes Congress's renewed pledge to seek cures and effective treatments for ALS. Every advocate involved deserves applause for their relentless efforts in pursuing this goal."

This historic reauthorization underscores the profound commitment to the ALS community and offers renewed hope for the thousands of individuals living with this disease. The I AM ALS organization continues to mobilize supporters to express gratitude to the Congressional champions who facilitated this significant legislative victory at bit.ly/A4A-TY.

As we move forward, the collective power of the I AM ALS community and their supporters will undoubtedly play a critical role in driving the mission to attain not only better treatments, but ultimately a cure for ALS.

About I AM ALS

I AM ALS is a prominent nonprofit organization dedicated to harnessing the power of community advocacy in the fight against ALS. With an emphasis on legislative change, quality of life improvements, and extensive awareness campaigns, I AM ALS is committed to impacting the lives of those affected by neurodegenerative diseases. For more information, visit www.iamals.org.