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The Vanishing Family

Love, Fate, and the Quest to End Dementia
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The Vanishing Family

By: Robert Kolker
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About this listen

 From the #1 New York Times bestselling author of Hidden Valley Road comes the heart-wrenching journey of a family facing an unthinkable destiny, whose flawed genetic code might hold the long-sought key to a cure for dementia.

In the idyllic American town of Pleasant Hills, Pennsylvania, there lived a family with nine siblings, the youngest a girl named Barb. As the older children headed off to college and started their lives, only Barb was home to see their beautiful, still-young mother fall under a gothic spell, changing into someone she didn’t recognize: withdrawn, neglectful, uncaring. Thus begins The Vanishing Family, journalist Robert Kolker’s superb follow-up to Hidden Valley Road (“Deeply compassionate and chilling,” wrote The Washington Post). This family, we learn, has a genetic mutation that causes dementia, but with an especially cruel twist. As early as their forties, formerly loving parents and hard-driving executives will lose their jobs, have affairs, take up drinking—shed all inhibitions and sense of responsibility—and become people their families hardly know. Their former personalities seem to vanish—and there is a fifty-fifty chance that it will happen to their children, too.

The Vanishing Family unfolds like a heartbreaking thriller as the siblings begin to realize that what happened to their mother is happening to them: first one, then two, three, four, and more begin to change. Sue, in search of a calling, finds her place in caring for the others. Barb sets out to find a cure. Alongside their story, Kolker weaves in the dramatic scientific fight against dementia; after decades of blind alleys, this this family’s rare form of FTD (frontotemporal dementia) might lead to a breakthrough in the prevention and treatment of all dementia—including the scourge of Alzheimer’s disease. Moving, intimate, unexpectedly hopeful and redemptive, The Vanishing Family is an enthralling narrative about one family’s fate, and a medical detective story that speaks to all of us who fear losing ourselves at the end. Alzheimer's & Dementia Biological Sciences Evolution & Genetics Genetics Medical Physical Illness & Disease Professionals & Academics Science

Critic reviews

"This is a triumph of reporting, and an absolutely compelling exploration of neuroscience and genetics. At its heart, though, it's a poignant, heartfelt story about family and how love sustains even in the most difficult circumstances. Like Kolker's other work, it is full of deep humanity. It's a beautiful book."
—Susan Orlean, New York Times-bestselling author of The Orchid Thief and Joyride

“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
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