ACT for ALS Reauthorization Act Passes Congress, Extending Research…

Event summary

The Accelerating Access to Critical Therapies (ACT) for ALS Reauthorization Act of 2026 (H.R. 8205) passed both the House and Senate, heading to the President's desk for signature.
The bipartisan legislation extends key ACT for ALS programs through 2031, sustaining progress in ALS research, shared research infrastructure, and expanded access to investigational therapies.
The reauthorization effort was led by Representatives Mike Quigley and Ken Calvert in the House and Senators Lisa Murkowski and Chris Coons in the Senate.
ALS Network played a significant role in shaping and advancing the legislation, mobilizing advocates and working directly with congressional leaders.
The current authorization is set to expire on September 30, 2026, making timely reauthorization crucial to prevent disruption to critical programs.

The big picture

The passage of the ACT for ALS Reauthorization Act underscores the bipartisan support for advancing research and access to therapies for rare neurodegenerative diseases. This legislation is part of a broader trend toward patient-centered approaches in healthcare policy, aiming to bridge gaps in traditional clinical trials and expand access to investigational treatments. The extended funding through 2031 provides stability for the ALS research community, potentially attracting more investment and collaboration in the field.

What we're watching

Legislative Timeline: Whether the President will sign the reauthorization into law before the September 30 expiration date, ensuring continuity of critical ALS programs.
Research Impact: How the extended funding and infrastructure support will accelerate ALS research and therapy development, particularly for rapidly progressive cases.
Advocacy Influence: The role of sustained advocacy by the ALS community in shaping future healthcare policy and legislative priorities.