The following excerpt is from the New York Times Magazine.
It seemed as if it would be a perfectly ordinary occasion, that hot August day in 1959. Three generations of a large Oklahoma family gathered at a studio in nearby Perryton, Tex., to have a photo taken of the elders, 14 siblings ranging in age from 29 to 52. Afterward, everyone went to a nearby park for a picnic.
In the end, 10 of those 14 brothers and sisters developed Alzheimer’s, showing symptoms, on average, at around age 50. The family, once close, soon scattered, each descendant of the 14 privately finding a way to live with the possibility that he or she could be next.
More than five decades later, many of these relatives have come together to be part of a large international study of families who carry an Alzheimer’s gene. The study, known as DIAN (for Dominantly Inherited Alzheimer Network), involves more than 260 people in the United States, Britain and Australia and includes at least 10 members of Doug and Gary’s family. Since 2008, researchers have been monitoring the brains of subjects who have mutations in any of three genes that cause Alzheimer’s to see how the disease develops before symptoms occur. By early next year, DIAN researchers plan to begin a new phase. Subjects will receive one of three experimental drugs that the researchers hope will slow or stop the disease in people otherwise destined to get it. (A similar study is expected to start around the same time in Colombia, testing one drug in a large extended family that carries a mutation in one gene that causes Alzheimer’s.)
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