In Valley of Forgetting: Alzheimer’s Families and the Search for a Cure, author Jennie Erin Smith is walking a two-way street. The families of mostly poor and working-class Colombians afflicted by a rare neurological condition serve as a narrative framework that allows Smith to tell the technical story of decades of groundbreaking brain research. But the research and the rare condition also serve to introduce the reader—and scientists and journalists around the world—to a multigenerational saga that is a compelling story in itself.
Valley of Forgetting illustrates the lives of families from the hills around Medellin whose parents and cousins succumb to aggressive forms of Alzheimer’s disease, with symptoms first popping up in patients’ 30s and 40s. Doctors and researchers, both from Colombia and abroad, have spent decades trying to learn from the families, in the hopes that this unusual concentration of a rare form of the illness could lead to a cure. The book brings together tales of Big Pharma, academic colonialism, professional jealousy and medical ethics, all with the coincidental backdrop of the epicenter of an international drug war.
It also raises tough-to-answer questions. Should patients at the highest risk for early-onset Alzheimer’s be told of their genetic precondition? Is it moral for those patients to have children, knowing the risk of passing on the genes is high? What does the global medical community owe poor people who participate in clinical trials?
Two elements of the story stand out. First, the dedication with which the Colombian team has obsessively tracked and sought out new families over the course of decades, traipsing through militia-infested rural areas to add to their family trees and find new potential carriers. Second, the devotion of Smith herself, who has spent years inside the homes of both the patients and the researchers, and in exam rooms and other intimate spaces that give the author a stunning level of vivid firsthand detail.
Smith’s bright, crisp portraits of both the studiers and the studied make the various scientific stumbling blocks encountered along the way all the more upsetting. The Alzheimer’s community, after all, had pledged to find a cure by 2025.
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