Public Policy Priorities

For FY2026, the greater ALS Community is asking Congress to: 

1. Fully fund the Act for ALS at $100 million, with $75 million for the NIH expanded access program under section 2 and $25 million for the HHS Public-Private Partnership for Rare Neurodegenerative Diseases and FDA Rare Neurodegenerative Disease Grant Program. Any funds that NIH cannot use for expanded access should go towards therapeutic research development advance new ALS therapies. We also request the FDA continue to exercise its 2019 guidance on regulatory flexibility and to consider patient tolerance for risk in ALS drug approvals.

2. Increase funding to $80 million for the ALS CDMRP program at the Department of Defense (ALSRP), which funds clinical research. 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.

3. Increase NIH funding to $180 million for ALS research. A reduction in research funding for ALS poses a significant risk to the progress of developing new therapies, identifying biomarkers and ultimately finding a cure for ALS.

4. Increase funding to $15 million to the CDC to maintain the National ALS Registry and increase research into causes and prevention strategies for ALS.

The FDA must use every tool and opportunity it has to fast track the review and approval of new drugs for ALS. People living with ALS are willing to tolerate much greater risk on drugs that meet endpoints including clinically meaningful delay in ALS progress, a strong safety profile, significant survival benefit and an advance beyond or on top of currently available ALS care. We need an FDA that fully funds and staffs ALS issues and remains attuned to the needs of the ALS community.

Congress must reduce barriers to clinical trial participation.