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Protecting ALS Research: Why NIH’s Funding Cap Must Be Reversed
ALS United Rocky Mountain stands with the ALS community across the country in opposing the National Institutes of Health (NIH) decision to limit indirect cost coverage for research grants. In early 2025, President Donald Trump issued several executive orders significantly impacting the National Institutes of Health (NIH) and the broader U.S. scientific community. These orders have introduced funding restrictions, operational freezes, and policy shifts that have raised concerns among researchers and institutions nationwide. NIH policy change, outlined in the “Supplemental Guidance to the 2024 NIH Grants Policy Statement: Indirect Cost Rates,” would impose a devastating 15% cap on indirect costs—jeopardizing critical research efforts and slowing the race toward new ALS treatments.
NIH is the world’s leading funder of biomedical research, they play a crucial role in driving scientific breakthroughs.
Scientific research is the backbone of progress in our fight against ALS. Every breakthrough, every clinical trial, and every innovative treatment is built on the foundation of dedicated research funding. However, recent changes imposed by the National Institutes of Health (NIH) threaten to undermine that progress—particularly for ALS and other neurodegenerative diseases that rely on robust, well-funded research initiatives.
Historically, these costs have varied between 40% and 60%, depending on institutional needs. By slashing them to an arbitrary 15%, the NIH is effectively forcing research institutions to make impossible choices: cut vital research programs, scale back operations, or find alternative sources of funding—options that are neither feasible nor fair to those fighting for a cure. Indirect costs cover essential expenses such as lab maintenance, administrative support, data security, facility operations, and compliance with safety regulations—critical elements that ensure researchers can focus on finding cures rather than struggling to keep the lights on.
Previously, the NIH has recognized the importance of these costs, negotiating fair rates with universities based on actual expenditures. This new cap undermines that established process and risks derailing years of progress in the fight against ALS and other deadly diseases.
Medical research is an investment—one that yields new treatments, improves quality of life, and ultimately saves lives. The United States has long been a global leader in scientific discovery because of its commitment to funding innovation. For people living with ALS, time is not a luxury and these cuts threaten to stall advancements for patients who urgently need new therapies.
The NIH’s funding cap will have negative effects on ALS Research:
- Jeopardizes ALS Research Programs: Labs conducting critical ALS studies may be forced to shut down or drastically reduce their operations.
- Disrupts Clinical Trials: With fewer resources to support these trials, promising new therapies may be delayed or discontinued.
- Reduces Institutional Support: Universities and medical centers may no longer afford to take on NIH-funded ALS research projects, leading to fewer studies and slower progress.
Advocacy in Action: How You Can Help
This funding cap is not just an administrative decision—it’s a roadblock to hope for thousands of families affected by ALS. The good news is that we can fight back. Here’s how:
- Contact Your Senators and Representatives – Urge Congress to intervene and push NIH to reverse this harmful policy. Lawmakers need to hear from those affected by ALS and the research community.
- Sign Petitions & Raise Awareness – The more voices we have, the louder our message.
- Join advocacy groups calling for change and spread the word on social media.
The NIH has long been a champion of medical progress, but this decision is a step in the wrong direction. For ALS patients and researchers alike, this funding cap is not just about numbers—it’s about lives. It must be reversed to ensure that groundbreaking research can continue without unnecessary barriers.