Get Full Government Meeting Transcripts, Videos, & Alerts Forever!
Get email alerts on the Down Syndrome Advocacy topic
No spam. Unsubscribe anytime.
Down syndrome advocates urge NAPA to reserve new council seat for community disproportionately affected by Alzheimer’s
Summary
The National Down Syndrome Society asked the NAPA council to designate the newly created 'community disproportionately affected' seat for the Down syndrome community, highlighting the group’s roughly 90% lifetime risk of Alzheimer’s disease and the need to ensure equitable access to future treatments.
WASHINGTON — Margot Rondeau, senior director of health and wellness at the National Down Syndrome Society, urged the National Alzheimer’s Project Act (NAPA) LTSS subcommittee to designate the recently created council seat for a community “disproportionately affected” by Alzheimer’s disease for the Down syndrome community.
Rondeau, who described multiple prior presentations to the council on Down syndrome–associated Alzheimer’s disease (DS‑AD), said people with Down syndrome face a roughly 90% lifetime risk of developing Alzheimer’s disease and appealed for intentional inclusion in all six of NAPA’s council goals. “It is the shared nightmare of every parent in the Down syndrome community,” Rondeau said, adding that equity must extend to access to future treatments and clinical advances.
Rondeau said she feared breakthroughs that become available to the general public could exclude the roughly 200,000 people living with Down syndrome in the United States if policy and access measures are not deliberate. She asked that the newly created NAPA seat for a disproportionately affected community be designated for Down syndrome representation to ensure the community’s needs are elevated in planning and implementation.
Ending: Rondeau asked council members and decision‑makers to act to ensure therapies and supports are accessible to people with Down syndrome and their families as research and treatments advance.
