AFTD is deeply concerned about staff cuts and funding disruptions at the U.S. Department of Health and Human Services (HHS), and the potential impact they will have on dementia-focused research and programs across the agency.
In partnership with other advocacy organizations, AFTD has been communicating with policymakers about the importance of these programs for people with FTD and their caregivers, as well as the progress being made in FTD research. Our collaboration with other advocacy groups helps to amplify our voice and maximize our impact on policy decisions and legislation affecting our community.
For instance, AFTD is a member of the Ad Hoc Group for Medical Research, a coalition of nearly 400 patient and voluntary health groups, medical and scientific societies, academic and research organizations, and industry. Its mission is to enhance federal investment in biomedical, behavioral, social, and population-based research by increasing funding for the National Institutes of Health (NIH).
Recently, AFTD and 509 organizations from the coalition signed a letter to Congress advocating for increased NIH funding for fiscal year 2026, which begins October 1. Specifically, the letter requests that Congress appropriate at least $51.303 billion, which would allow the agency’s budget to keep pace with inflation and promote meaningful growth of approximately six percent. As Congress begins appropriations negotiations in earnest this spring, AFTD plans to meet with key members to advocate for NIH funding and other programs vital to people with FTD and their families.
If you have not done so already, we encourage you to become an AFTD advocate by sending an email to your members of Congress asking them to support increased NIH funding. You can also see other causes that AFTD supports by viewing a list of advocacy letters that AFTD has signed onto.
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