Some of the most important studies of potential treatments for Alzheimer's disease rely on a group of participants who know they may never fully reap the benefits.

"It's not for us," says June Ward, 64, who carries a rare gene mutation that virtually guarantees she will get Alzheimer's in the next few years. "It's for my sister's children and their children, so that they won't have the same 'nothing' to choose from."

Ward is a member of the Dominantly Inherited Alzheimer Network (DIAN), which includes more than 200 families at more than 40 sites in 18 countries. All the families who carry gene mutations that cause symptoms of Alzheimer's to appear in middle age, or even earlier.

The families' willingness to serve as research subjects over the past two decades has allowed scientists to make key discoveries about how Alzheimer's begins, and how certain drugs may slow its progress.

Yet DIAN, run by WashU Medicine in St. Louis, faces an uncertain future amid cuts and delays in federal funding. It is currently maintaining only essential functions while awaiting word on critical grants from the National Institutes of Health, or NIH.

https://www.npr.org/2026/05/07/nx-s1-5759696/early-alzheimers-families-network-risk