Valley of Forgetting: Alzheimer's Families and the Search for a Cure

by Jennie Erin Smith

Overview

"Valley of Forgetting reminds us that scientific progress is measured not only in breakthroughs but also through the sacrifices people make, the trust that is built. It is a tender story of the unshakable will to make meaning in the face of inexorable loss. . . . Smith elegantly captures what it means to love, to belong, to hold on to one another when so much is uncertain.” —Washington Post

The riveting account of a community from the remote mountains of Colombia whose rare and fatal genetic mutation is unlocking the secrets of Alzheimer’s disease

In the 1980s, a neurologist named Francisco Lopera traveled on horseback into the mountains seeking families with symptoms of dementia. For centuries, residents of certain villages near Medellín had suffered memory loss as they reached middle age, going on to die in their fifties. Lopera discovered that a unique genetic mutation was causing their rare hereditary form of early onset Alzheimer’s disease. Over the next forty years of working with the “paisa mutation” kindred, he went on to build a world-class research program in a region beset by violence and poverty.

In Valley of Forgetting, Jennie Erin Smith brings readers into the clinic, the laboratories, and the Medellín trial center where Lopera’s patients receive an experimental drug to see if Alzheimer’s can be averted. She chronicles the lives of people who care for sick parents, spouses, and siblings, all while struggling to keep their own dreams afloat. These Colombian families have donated hundreds of their loved ones’ brains to science and subjected themselves to invasive testing to help uncover how Alzheimer’s develops and whether it can be stopped. Findings from this unprecedented effort could hold the key to understanding and treating the disease, though it is unclear what, if anything, the families will receive in return.

Smith’s immersive storytelling brings this complex drama to life, inviting readers on a scientific journey that is as deeply moving as it is engrossing.

Product Details

ISBN-13:	9780525536079
Publisher:	Penguin Publishing Group
Publication date:	04/01/2025
Pages:	384
Product dimensions:	9.10(w) x 6.20(h) x 1.30(d)

About the Author

Jennie Erin Smith is the author of Stolen World. She is a regular contributor to The New York Times and has written for The Wall Street Journal, The Times Literary Supplement, The New Yorker, and others. She is a recipient of the Rona Jaffe Foundation Writers’ Award; the Waldo Proffitt Award for Excellence in Environmental Journalism in Florida; and two first-place awards from the Society for Features Journalism. She lives in Florida and Colombia.

Editorial Reviews

02/03/2025

In this powerful report, journalist Smith (Stolen World) details neurologist Francisco Lopera Restrepo’s quest to understand the epidemic of early-onset dementia afflicting families in the rural Antioquia region of Colombia. Smith recounts the herculean efforts of Lopera and his team, who began gathering family genealogies and blood samples against the backdrop of the 1980s Medellín drug wars in the hope of “unlocking the disease’s secrets.” In addition to dodging cartel members, the doctors had to win the trust of afflicted families and counter local beliefs that witchcraft was to blame. The author documents how over the ensuing decades, Lopera helped identify a genetic mutation responsible for the epidemic, compiled a registry of some 6,000 carriers in Antioquia, and conducted a major clinical trial of a potential dementia treatment, though the drug was found to be ineffective. Smith offers an accessible overview of how genetic factors contribute to dementia, but the real draw is the finely observed portrait of Lopera and the heart-rending stories of young Antioquians left to care for dying parents and siblings, whose mental declines start as early as their mid-30s, while grappling with the fear that they might also carry the mutation. It’s a poignant depiction of a community in crisis. Agent: Lynn Johnston, Lynn Johnston Literary. (Apr.)

Publishers Weekly

"Valley of Forgetting reminds us that scientific progress is measured not only in breakthroughs but also through the sacrifices people make, the trust that is built. It is a tender story of the unshakable will to make meaning in the face of inexorable loss—one that begins long before death itself. In her willingness to sit with contradictions—hope and despair, progress and stagnation, science and faith—Smith elegantly captures what it means to love, to belong, to hold on to one another when so much is uncertain.” —Washington Post

“The book left me aching and enraged. . . . Clinical trials are essential, but we must not ignore the turmoil of the participants – people to whom Smith has finally given identities.” —New Scientist

“Comprehensive. . . [Ms. Smith] braved some fairly dangerous situations to get the full story. . . . Compelling.” —Wall Street Journal

“Intelligent, empathetic, and outstanding in its observational detail, Valley of Forgetting is a work celebrating medical research crafted by a writer of extraordinary talent.” —Booklist (starred review)

“A multigenerational saga that is a compelling story in itself. . . . [Smith] 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.” —BookPage (starred review)

“Powerful. . . . a poignant depiction of a community in crisis.” —Publishers Weekly

“Jennie Erin Smith writes with such narrative skill, such empathy and curiosity, such a strong sense of the place where science and people meet, that you come out with the feeling of having witnessed an extraordinary investigation into the mysteries of what makes us human.” —Juan Gabriel Vásquez, author of The Sound of Things Falling

“Valley of Forgetting is the masterfully told story of how, over the past four decades, a human drama of extraordinary significance has quietly unfolded in a rural province of Colombia. Jennie Erin Smith deserves a wide readership for this book that is at once revealing, unsettling, timely, and ultimately, deeply moving.” —Jon Lee Anderson, author of Che Guevara: A Revolutionary Life and To Lose a War

“Jennie Erin Smith’s story of scientific detective work under impossible circumstances, and the people who offer up their trust and their brains, is harrowing, but also more exhilarating than you’d imagine a book about dementia could possibly be.” —Larissa MacFarquhar, author of Strangers Drowning: Impossible Idealism, Drastic Choices, and the Urge to Help

“Solid medical reportage with a hopeful conclusion that science may soon bring a cure for a devastating disease.” —Kirkus Reviews

“Anyone who still holds a Dawkinsian view of science as abstract and logical should read Valley of Forgetting. . . . [a] valuable guide." —Times Literary Supplement

"A fascinating tale of scientific detective work.” —Town & Country

From the Publisher

2025-01-17
The quest for a cure for Alzheimer’s in a perhaps unlikely venue.

Gabriel García Márquez’s novelOne Hundred Years of Solitude detailed a number of genetic consequences of isolation, with hinterland families manifesting odd physical characteristics. The same isolation, Colombian researchers hypothesize, accounts for the pronounced presence of hereditary dementia there. As science writer Smith observes, there was the possibility that the Colombian countryside harbored “many potential triggers of dementia, including chemicals used in mining and agriculture.” Yet the fact that so many families had members with early-onset dementia, often setting in before age 50 and even younger, suggested a genetic cause—and one early discovery was that “every sick person had had a sick parent.” In a time of civil war and narco kings, medical research in Colombia was a fraught proposition, with investigators including one hero of the piece, a doctor named Francisco Lopera Restrepo, taking shelter abroad for a time as colleagues and students were kidnapped and murdered. When things calmed down, foreign scientists arrived to study the phenomenon alongside homegrown researchers, isolating genes and eventually helping establish clear patterns of inheritance—and, interestingly, also accumulating proof that trauma of some sort often proved a trigger in setting off a patient’s decline. Frustratingly, drugs used in extensive trials did not prove efficacious at first, though Big Pharma kept an eye open for the possibilities of a market in Colombia, “a common, and frequently criticized, practice among pharmaceutical firms working in the developing world: testing expensive therapies in poor populations, then passing the costs on to strapped healthcare systems.” The quest continues: As Smith writes in closing, the Colombian institute called Neurociencias has been an important pioneer in identifying numerous genetic mutations that may in time yield keys to treatment.

Solid medical reportage with a hopeful conclusion that science may soon bring a cure for a devastating disease.

Kirkus Reviews