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Down syndrome advocates press NAPA to include DSAD priorities and council representation
Summary
National Down Syndrome Society and family speakers urged the council to recognize Down syndrome–associated Alzheimer's disease (DSAD) as a priority, cited a ~90% lifetime risk and an FDA patient‑focused meeting, and requested a Down syndrome representative on the council.
Margot Rondeau, chief programs officer at the National Down Syndrome Society (NDSS), summarized NDSS efforts and asked the NAPA Council to ensure people with Down syndrome are included across research and policy initiatives. She cited a June 2 patient‑focused drug development meeting with the FDA that included more than 160 participants and said the Down syndrome community faces a roughly 90 percent lifetime risk of Alzheimer's pathology because of chromosome 21 trisomy.
Dee Stufflebaum, a parent whose daughter Susie participates in Alzheimer's research at Washington University, described long‑running family participation in trials and the personal consequences families face as friends and peers develop dementia at younger ages. Rondeau noted that the 2024 NAPA Reauthorization Act expanded nonfederal membership on the council and asked that the council include a Down syndrome representative and measurable DSAD priorities in the national plan.
Speakers emphasized inclusion in clinical trials, on‑demand researcher training to adapt studies for participants with Down syndrome, and a forthcoming "voice of the patient" report from the NDSS‑led FDA meeting.
