Title: Mapping fate
First published: 1995
Description: In Mapping Fate, Alice Wexler tells the story of a family at risk for a hereditary, incurable, fatal disorder: Huntington's disease, once called Huntington's chorea. That her mother died of the disease, that her own chance of inheriting it was fifty-fifty, that her sister and father directed much of the extraordinary biomedical research to find the gene and a cure, make Wexler's story both astonishingly intimate and scientifically compelling.

Recording her own emotional odyssey, Wexler sifts through memories, dreams, and her mother's beloved books and letters to find the personality of the woman Huntington's stole away. Despite such painful circumstances, Wexler writes with clarity and depth about mothers and sisters, about the nature of living at risk, and how her family was alternately driven apart and flung together by this destiny they could not escape.

In later chapters, she explores how her father, Milton, and sister, Nancy, developed innovative methods to stir up science. Nancy, like Alice, living at risk, helped organize the effort that led to the stunning discovery in 1983 of a genetic marker for Huntington's, decades before most scientists thought possible. She then spearheaded an international collaborative group that identified the gene ten years later.

While in Venezuela to take family histories from people with Huntington's on the shores of Lake Maracaibo, Nancy showed the hesitant community her own biopsy scar. She was not just a doctor trying to help; she was one of them.

. With grace and eloquence, Alice Wexler lifts her story beyond the specifics of Huntington's to write with a startling universality. It is as if, ultimately, she writes of all families with secrets and illness, of all mothers who are loved and longed for, of the reaches and limits of medical science. Mapping Fate is full of people thrown by chance into living extraordinary lives and illuminates the self-knowledge and action of which they are capable.
Subjects: Huntington's chorea, Research, Patients, Family relationships, History, Genetic disorders, Personal narratives, Huntington's disease, Huntington Disease, Popular Works, Inborn Genetic Diseases, Family
Places: United States
People: Alice Wexler (1942-)