Advocates urge NAPA to explicitly name frontotemporal degeneration in the National Plan

Matt Sharp, director with the Association for Frontotemporal Degeneration, told the National Alzheimer's Plan Advisory (NAPA) Council that families living with frontotemporal degeneration (FTD) feel unseen when the national plan refers only to "ADRD." He said FTD often strikes people in their 40s to 60s and that diagnostic delays can be lengthy: "it can take up to 5 years or more, on average 3 years, for a diagnosis to be made," he said, adding that the plan should explicitly name FTD across goals, strategies and metrics.

Sharp outlined several practical priorities for the council: increased biomarker research and diagnostic tools tailored to FTD, expanded access to specialists and neuropsychological testing, genetic counseling for families (he said "up to 40 percent" of FTD cases have a genetic basis), and caregiver supports including workplace and financial assistance. "When the national plan, talking about FTD, we ask that you explicitly and consistently name it in the goals, strategies, metrics, and implementation activities," he said.

The council heard multiple supplemental requests from AFTD ambassadors who described young‑onset cases and the consequences of misdiagnosis. Speakers urged NAPA to measure outcomes that matter to families — communication, independence, safety and quality of life — rather than relying solely on measures developed for later‑onset Alzheimer's disease. The public commenters requested that the council incorporate FTD‑specific metrics into planned implementation timelines and prioritized research funding.