My Life, My Science: Pursuing a Cure for Huntington's Disease

When Nancy Wexler was 23, her father revealed that the mysterious illness inexorably diminishing her mother had a name. Huntington's disease, a fatal, hereditary, neurodegenerative disorder. Newly aware she had a fifty-fifty chance of developing the same condition, Wexler could have retreated. Instead, she immersed herself in what has become a lifetime's pursuit of the causes of the disease and a cure. She pioneered groundbreaking fieldwork that enabled the identification of the responsible gene. She took charge of what is now the Huntington's Disease Foundation and made it a force to be reckoned with. And when the human genome became a focus of scientific study, she was an eloquent voice for patients in disease gene research and insistent advocate for ethical use of genome sequence information. Now living with Huntington's, Nancy Wexler has drawn on decades of letters, research notes, and vivid memories to describe her remarkable life with warmth, wit, and unsparing honesty. She takes us from a privileged but shadowed California childhood to the shores of Venezuela's Lake Maracaibo, where she and colleagues earned the community trust that enabled them to collect blood samples and construct pedigrees, to the innovative consortium of research laboratories where those samples revealed the malevolent gene, to the halls of Congress where she pressed legislators for resources, and the boardrooms where philanthropists were persuaded into action. In this book, Wexler tells a unique story about the intertwining of personal stakes and professional passions, a testament to her courage, persistence, and belief that science can change destinies--one life, one family, one gene at a time.