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Death Cuts Short The Life Of An Alzheimer's Research Volunteer

Sep 23, 2014
Originally published on September 29, 2014 2:45 pm

If you're a regular Shots reader or Morning Edition listener, you may remember a recent story about Justin McCowan, a man with Down syndrome who wanted to help researchers find a treatment for Alzheimer's disease. McCowan died in his sleep on Thursday at his home in Santa Monica, Calif. He was 40.

Alzheimer's researchers have become interested in Down syndrome because most people with the genetic condition develop Alzheimer's by the time they reach 60. A drug that delays or prevents Alzheimer's in people with Down syndrome will probably also work in the general population, scientists say.

McCowan volunteered for a monthlong study of an experimental Alzheimer's drug at the University of California, San Diego. He decided he was willing to undergo the brain scans and blood tests involved because he saw it as a way to help his friend Maria, who also has Down syndrome and had developed Alzheimer's. "I feel very sad about Maria because she doesn't remember anything," McCowan said.

In a small way, McCowan did help his friend, says Michael Rafii, a researcher who oversees the study. "People with Down syndrome have a huge amount to contribute to the research world," he says, adding that researchers from UCSD will be among those attending McCowan's funeral.

Updated Sept. 29, 2014: McCowan's participation in the study ended a year ago, so there's no reason to think the experimental drug he took contributed to his death, Rafii says.

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AUDIE CORNISH, HOST:

A few weeks ago, we aired a story about Justin McCowan, a man with Down syndrome who found a way to contribute to scientific research. McCowan died last week at age 40. NPR's Jon Hamilton has this remembrance.

JON HAMILTON, BYLINE: Like many people who volunteer for research studies, Justin McCowan wanted to make a difference. He told me he especially wanted to help a friend who had Down syndrome and was in the late stages of Alzheimer's disease.

JUSTIN MCCOWAN: Her name is Maria. And I feel very sad about Maria because she doesn't remember anything.

HAMILTON: She couldn't even recognize her parents, so Justin volunteered for a study of an experimental Alzheimer's drug - that meant brain scans, blood samples and lots of trips from Santa Monica to a clinic at the University of California, San Diego. Michael Rafii directs that clinic. He says, Justin's participation did make a different.

(SOUNDBITE OF PHONE CALL)

MICHAEL RAFII: People with Down syndrome have a huge amount to contribute to the research world as we try to understand the development of Alzheimer's disease.

HAMILTON: That's because the majority of people with Down syndrome develop Alzheimer's by age 60. Taking part in a research study also offered something to Justin - his mother Annamarie McCowan says it gave him a way to contribute.

MCCOWAN: These were choices Justin made. These weren't choices we made for Justin. We believed that he really understood it well enough to be able to say yes or no.

HAMILTON: Justin McCowan died in his sleep, at his home in Santa Monica. Researchers from UC San Diego will be among those attending his funeral. Jon Hamilton, NPR News. Transcript provided by NPR, Copyright NPR.