Bipartisan Push Seeks Boost in ALS Research
Congressman Jason Crow (D-CO) is leading a bipartisan group of lawmakers in a push to significantly expand federal funding for Amyotrophic Lateral Sclerosis (ALS) research in the upcoming 2026 fiscal year budget. The move aims to accelerate efforts on effective treatments and a cure for the neurodegenerative disease.
In a letter signed by 61 members of Congress, Crow urged key House appropriators to prioritize funding increases across several federal agencies involved in ALS research and patient care — including FDA, NIH, and CDC.
Crow’s proposal includes:
- $25 million for FDA’s Rare Neurodegenerative Disease Grant Program: Created under the ACT for ALS Act, this program supports the development and regulatory approval of new therapies for ALS and similar conditions.
- $180 million for ALS research at NIH: A major increase from current funding levels, this would also maintain $75 million in “Expanded Access Grants” for ALS patients not eligible for clinical trials, in line with the ACT for ALS law.
- $15 million for the CDC’s National ALS Registry and Biorepository: The funding would support data collection, biological sample storage, and new research initiatives — including an additional $5 million focused on studying ALS among military personnel and veterans.
The letter builds on Crow’s longstanding advocacy for ALS patients. In recent years, he has championed legislation to expand treatment access, eliminate insurance delays, and raise awareness through initiatives like designating May as ALS Awareness Month and co-founding the bipartisan ALS Caucus.