The Vanishing Family: Love, Fate and the Quest to End Dementia, written by renowned writer Robert Kolker, is a heartbreaking account of one of Cure MAPT FTD's founding families. It is also a medical detective story, following in the footsteps of scientists and family members, as they search for a cure. It is their story, and all of our stories. Buy the book here.
Praise for The Vanishing Family
"Mr. Kolker handles complex neuroscience deftly but also remains attuned to the unique philosophical questions raised by FTD."
--Jennie Erin Smith, The Wall Street Journal
“A moving account of one Pennsylvania family’s struggle with a rare inherited form of frontotemporal dementia. . . . Kolker skillfully translates complex neuroscience into accessible prose and balances scientific discovery with intimate family drama. . . . It’s a powerful examination of inheritance, resilience, and the human cost of medical uncertainty.”
—Publishers Weekly
“A compelling view of dementia and its devastating effect on victims and family alike.”
—Kirkus Reviews
“An extraordinary and deeply human story about the long and twisting road to a scientific cure for dementia. Drawing on one family's harrowing genetic legacy, Bob Kolker illuminates not only the promise of gene-targeted therapies but also the brutal calculus of learning your biological fate. The Vanishing Family reads like a gripping medical mystery and an intimate family diary, forcing all of us to confront what it means to lose, and perhaps preserve, the self. This book is unforgettable.”
—Sanjay Gupta MD, associate professor of neurosurgery at Emory University, CNN chief medical correspondent, and author of the #1 New York Times bestseller Keep Sharp
“The Vanishing Family is a deeply intimate portrait of a family confronting a shared genetic fate, and the love, courage, and choices that follow. Robert Kolker brings clarity and compassion to frontotemporal dementia, offering both insight and urgency through his storytelling. His deep commitment to the FTD community makes this an important contribution, and this family’s willingness to share their story is both powerful and generous.”
—Emma Heming Willis, New York Times-bestselling author of The Unexpected Journey and advocate for FTD and caregivers
“The book, which reads like a medical detective story, spends much of its time introducing Barb's siblings. We learn, one by one, which sisters and brothers have frontotemporal dementia (FTD) and how it changes them. But those not heading for dementia face a different kind of challenge. Some choose to restructure their lives around caring for their siblings. They must navigate difficult, but necessary, conversations with their siblings' children. This makes for a read that is tough yet engaging.”
—Carissa Wong, New Scientist
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