The US government’s fiscal year runs from October 1st to September 30th. Each year, senators and representatives embark on a months-long process, called appropriations, to decide what to fund for the government’s next fiscal year.
Each year ALS advocates meet with and write to their senators and representatives during this process in the hopes of increasing federal funding for ALS research.
The good news is that our advocacy works. Thanks to efforts like ours, Congress has increased in federal funding for ALS research in recent years.
We need as many advocates as possible to let their representatives and senators know how important continued and increased federal funding for ALS research is to their constituents. You help keep ALS at the top of their agenda. By sending this messages, you are asking Congress to fund the following priorities:
1. Invest in clinical research by increasing funding to $80 million for the ALS CDMRP program at the Department of Defense (ALSRP) in FY2026. In the United States, Veterans are twice as likely to develop ALS. In FY2024, the ALSRP received $80 million+ in research proposals that met their high quality standards and were scored at the fund level; double the Congressionally allocated amount. This meant numerous high-quality research projects for novel ALS therapies were unfunded. If we are to end ALS, a currently terminal, underfunded disease, we cannot let high-quality research go underfunded. We must fund research to understand and find treatments for a disease that is service-connected, has a higher incidence among Veterans, and has direct relevance to the health of our military.
2. Fully fund the ACT for ALS at $100 million for FY2026, specifically allocating $75 million for the National Institute of Health (NIH) expanded access program and $25 million for the HHS Public-Private Partnership for Rare Neurodegenerative Diseases and FDA Rare Neurodegenerative Disease Grant Program.
3. Support NIH funding for ALS research to $180 million. Further investments in research funding for ALS significantly supports the progress of developing new therapies, identifying biomarkers, and ultimately finding a cure for ALS. Therefore, we request an increase in funding to provide $180 million in 2026 for pre-clinical and clinical ALS research.
4. Address underfunded research at the Centers for Disease Control and Prevention (CDC). CDC currently receives $10 million in funds for the National ALS Registry and Biorepository. We request an increase to $15 million to maintain this program and support research into causes and prevention strategies for sporadic and familial (genetic) ALS that can lower the incidence of ALS, including environmental impact.