Join me in the Trial-Ready Cohort-Down Syndrome and take part in this important research.
Frank is a Global Down Syndrome Foundation Research Advocate.
Lead researcher for TRC-DS, Michael Rafii, MD, PhD, participated in a congressional briefing on the status of research on Alzheimer’s disease in people with Down syndrome. ATRI, July 2023
Vanderbilt University Medical Center is recruiting adults with Down syndrome to conduct a new study. News Channel 5, Nashville, March 2023
Thirty years ago, the Down syndrome community helped scientists uncover critical learnings about the genetic basis of Alzheimer’s disease. Now, in 2023, we stand on the cusp of new treatments reaching the market. Fierce Biotech, March 2023
Watch a video featuring research study participants and why they participate. ACTC, Aug. 2022
People with Down syndrome, which causes intellectual and physical disabilities, are almost never included in clinical trials for drugs to treat or prevent Alzheimer’s, a situation advocates, patients and scientists decry and are trying to change. Washington Post, April 2022
An NIH-funded study suggests people with Down syndrome may benefit from Alzheimer’s disease treatments. National Institute on Aging, Dec. 2022
By the time they’re 40, most people with Down syndrome develop beta amyloid plaques in the brain — a key characteristic of Alzheimer’s disease. UC Irvine Health, March 2021
Many but not all people with Down syndrome develop Alzheimer’s disease when they get older. NIH, Nov. 2020
Listen to Bob explain why he participates in research because of his daughter with Down syndrome. National Institute on Aging, July 2019
When researchers at the University of California, San Diego wanted to study an experimental Alzheimer's drug last year, they sought help from an unlikely group: people with Down syndrome. NPR, Aug. 2014