Here’s what’s happening in Washington, D.C., and how you can help safeguard ALS programs and research.
Updates
Earlier this summer, the President signed H.R. 1 — the “One Big Beautiful Bill” — into law. Passed through a process called budget reconciliation, it makes significant changes to Medicaid, Medicare, and the Affordable Care Act (ACA) — programs that many people with ALS and their caregivers rely on for care and support. We are reviewing these changes and preparing to help families understand and navigate what’s ahead, while working with policymakers to protect the programs and services our community depends on. Read our full statement here.
We are also monitoring the recent federal research funding freeze at UCLA and the potential effects on patient care and scientific progress. Similar actions are taking place nationwide, and it is important that public officials safeguard both care and research funding. Read our full statement here and learn how you can help us advocate for these priorities.
Advocacy Opportunity
The government’s fiscal year runs from October 1 to September 30. As Congress shapes federal funding for the year ahead, we’re urging lawmakers to fully fund key ALS programs — including the ACT for ALS, the ALS Research Program at the Department of Defense, NIH research, and the CDC’s National ALS Registry and Biorepository. These investments drive research forward, expand access to care, and accelerate the search for new treatments.
Members of Congress are back in their home districts for the August recess, making this a great time to reach out, share your experiences, and encourage them to fully fund these programs. Take action now — click the button below or call your Members of Congress’ district offices and request full funding for ALS programs. https://alsnetwork.quorum.us/campaign/135885/
Thank you for your continued commitment to the ALS community. For questions or additional guidance on engaging with your Members of Congress, please contact us at advocacy@alsnetwork.org. We’re here to help.