The Association for Frontotemporal Degeneration (AFTD) continues to urgently advocate for robust and consistent funding for the National Institutes of Health (NIH) in FY 2026 appropriations. Despite being the most common dementia diagnosed in people under 60 years, FTD currently has no effective treatment to prevent its onset and slow its progression. Families and their loved ones living with FTD participate in medical research not only with the hope that it will benefit them, but with the goal of helping the next generation of families who will face this disease.

AFTD is part of a large community of patient, provider, medical, and scientific organizations who together advocate that Congress pass an appropriations bill that adequately funds the NIH each year. For FY 2026, which will begin on October 1, 2025, AFTD and the rest of our advocacy community will be requesting at least $51.303 billion for the NIH. This funding level would allow the agency’s budget to keep up with inflation and promote meaningful growth of approximately 6%. As Congress begins appropriations negotiations in earnest this spring, AFTD plans to meet with key members to advocate for NIH funding and highlight the importance of dedicated funding to FTD research. AFTD is also asking its strong community of advocates and volunteers to contact their members of Congress in support of FY 2026 NIH funding. You can participate in this community effort by contacting your elected officials.

The pivotal ARTFL-LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) study is a shining example of the important work that has been made possible by NIH funding. ALLFTD is a comprehensive research program across more than twenty clinical sites collaborating to build a cohort of patients with FTD available to participate in research trials, to collect data to identify the best clinical measurements and biomarkers to facilitate trials, and to better understand indicators of symptom onset. Founded in 2020, this critical multi-year investment to advance the scientific understanding of FTD has laid the groundwork for significant investment in the development and testing of novel therapeutics and must continue. We must ensure not only that the growth of this rich data repository study continues but that its contributions to the advancement of scientific understanding of FTD are preserved long-term. AFTD stands ready to partner with the broader dementia community to strongly advocate for robust federal funding to support efforts such as the ALLFTD study.