Comment on OMB-2026-0034-0001

The ALS Association appreciates the opportunity to provide these comments on OMB’s proposed Regulation for Federal Financial Assistance. The proposed rule would introduce new uncertainty into a research ecosystem where predictability, expert review, and continuity are essential to scientific progress and patient access. We respectfully urge OMB to withdraw the proposed rule due to its potential adverse impact on ALS research, clinical trial continuity, regulatory science, and patient access to innovation. The federal government should boost funding and lower barriers to ALS research, not cut support or create obstacles. Federal funding for ALS, as appropriated by Congress, is essential for advancing treatment, prevention, and eventual cure for this disease. If implemented, the proposed rule would make federal grants slower, more complicated, and less stable, while also allowing non-scientific interference in research decisions. It could reduce grant applications, shrink participation in the ALS research ecosystem, and weaken infrastructure that people living with ALS urgently need. This issue is urgent! For people living with ALS and their families, delays mean diminished function, lost opportunities, and less precious time with loved ones that cannot be recovered. Interruptions in funding would undermine recent momentum in biomarker development, clinical trials, regulatory science, data infrastructure, and therapy development. We respectfully urge OMB to withdraw the proposed rule and preserve stable, predictable, expert-driven federal research funding. Behind every grant, every trial, every new therapy is a family counting on this research ecosystem to work. People with ALS cannot afford delay!