ACT for ALS Reauthorization Passes Congress with One Day to Spare

Key points

• The ACT for ALS Reauthorization Act passed the US Senate on September 28, 2026, by unanimous consent, one day before the previous authorization was set to expire on October 1, 2026.
• The bill extends funding for ALS research, experimental treatments, and clinical trial infrastructure through 2031, building on the original 2021 legislation.
• The passage was driven by intense advocacy from the I AM ALS community, including emails, calls, and petition signatures, as well as public pressure from AEW wrestler Rebel, who is living with terminal ALS.
• The Muscular Dystrophy Association (MDA) and other advocacy groups are urging President Trump to sign the bill quickly to prevent a lapse in critical funding for patients with ALS.
• The bill has now been sent to the President's desk for final signature, with the current authorization set to expire on October 1, 2026.

Background

The ACT for ALS was originally enacted in 2021 to accelerate access to critical therapies for amyotrophic lateral sclerosis (ALS) and other rare neurodegenerative diseases. The 2026 reauthorization extends this funding through 2031, ensuring continued support for research, experimental treatments, and clinical trial infrastructure. The urgency of the 2026 passage was heightened by the fact that the previous authorization was set to expire on October 1, 2026, with just one day to spare. This follows a period of intense advocacy and public pressure, including a petition campaign promoted by AEW wrestler Rebel, who is living with terminal ALS. The bill's passage also comes amid broader congressional debates over healthcare funding and rare disease research, as well as recent developments in ALS drug development, such as the Phase 3 trial of ulefnersen, which met its primary endpoint in the rare FUS-ALS form.

How outlets are covering it

The Muscular Dystrophy Association (MDA) emphasized the bipartisan support for the ACT for ALS and urged the President to sign the bill quickly to prevent a lapse in critical funding for patients with ALS. The I AM ALS community highlighted the role of public advocacy, including emails, calls, and petition signatures, in driving the bill's passage. AEW wrestler Rebel, who is living with terminal ALS, promoted a petition to help the bill move through Congress, underscoring the personal stakes for patients. The Napa Valley Register reported on the final congressional passage, noting the urgency of the situation and the need for the President's signature. All sources agreed on the importance of the bill's passage but differed in their emphasis: MDA focused on the bipartisan support and the need for the President's signature, while I AM ALS and Rebel emphasized the role of public advocacy and the personal stakes for patients.

Why it matters

The passage of the ACT for ALS Reauthorization Act is a critical win for the ALS community, ensuring continued funding for research, experimental treatments, and clinical trial infrastructure through 2031. The bill's passage, driven by intense advocacy and public pressure, highlights the importance of sustained support for rare disease research and the personal stakes for patients living with ALS. The urgency of the situation, with the previous authorization set to expire on October 1, 2026, underscores the need for quick action by the President to prevent a lapse in critical funding. This development also reflects the broader trend of increased public engagement and advocacy in healthcare policy, as well as the growing recognition of the need for accelerated access to therapies for rare diseases.

What to watch

The ACT for ALS Reauthorization Act has now been sent to President Trump for final signature. The Muscular Dystrophy Association (MDA) and other advocacy groups are urging the President to sign the bill quickly to prevent a lapse in critical funding for patients with ALS. The current authorization is set to expire on October 1, 2026, with just one day to spare. If the President signs the bill, the funding for ALS research, experimental treatments, and clinical trial infrastructure will be extended through 2031. If the bill is not signed, the previous authorization will expire, potentially leading to a lapse in critical funding for patients with ALS. The next steps will depend on the President's decision and the ongoing advocacy efforts of the I AM ALS community and other stakeholders.