Overview

""An intimate and eloquent memoir of scientific discovery, social policy-making, and self-reflection that is as inspiring as it is harrowing. With verve, wit, and passion, Nancy Wexler tells her own story of creating a new model for biomedical research while racing to find a cure for the lethal family disease she herself will one day inherit. Searing and illuminating."" -- Dr. Sanjay Gupta, neurosurgeon, CNN medical reporter, and author ""Nancy Wexler's story is a lesson in courage, fortitude, heroism, and above all ... love. I read it in one gulp. My heart is full."" -- Carol Burnett, actor and writer 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 disease, 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.

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9781621825456

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Reviews

""Among dreaded inherited genetic conditions, Huntington's disease may be the most notorious, challenging scientists, historians, and novelists for centuries. This is Nancy Sabin Wexler's enthralling account of her own search for the source of this difficult inheritance. Pursuing a cure, Wexler becomes an anthropologist, entering a world of families across the globe who struggle and persist through the bond that Huntington's disease bestows on their communities. Her extraordinary story brings science to life and life to science."" -- Rosemarie Garland-Thomson, Professor Emerita of English and Bioethics, Emory University, Hastings Center Fellow and Senior Advisor on Disability ""An intimate and eloquent memoir of scientific discovery, social policy-making, and self-reflection that is as inspiring as it is harrowing. With verve, wit, and passion, Nancy Wexler tells her own story of creating a new model for biomedical research while racing to find a cure for the lethal family disease she herself will one day inherit. Searing and illuminating."" -- Dr. Sanjay Gupta, neurosurgeon, CNN medical reporter, and author ""Nancy Wexler's story is a lesson in courage, fortitude, heroism, and above all ... love. I read it in one gulp. My heart is full."" -- Carol Burnett, actor and writer ""Nancy Wexler's vision and courage have drawn countless scientists into Huntington's disease research, embodying brilliance, compassion, and unwavering perseverance. This memoir is a vivid portrait of a scientist and advocate whose work transformed our understanding of the disease and touched hearts and lives around the world."" -- Dr. Elena Cattaneo, Full Professor of Pharmacology, University of Milan, Italy; Senator for Life of the Italia Republic ""No one in human genetics research has done more to connect cutting-edge science and its powerful human consequences than Nancy Wexler. Here is her own compelling and intimate narrative, written in riveting prose even as the disease she gave her life to conquering seeks to silence her voice. Nancy's story shows us the nobility of searching for truth and healing with the tools of science and how--despite living under a cloud--it is possible to pursue a life of fearless dedication."" -- Dr. Francis Collins, former Director of the U.S. National Institutes of Health ""With honesty, humor, and infinite empathy--but never self-pity--Nancy Wexler describes her unrelenting search for a treatment for the inherited scourge of Huntington's disease. Over decades, she has built a dedicated alliance of the willing, across disciplines and continents, to better understand this dread disease."" -- Dr. Susan Hockfield, Professor of Neuroscience and President Emerita, Massachusetts Institute of Technology

Author Information

Nancy Sabin Wexler, PhD, is a pioneering neuropsychologist, geneticist, and advocate best known for her leadership in the discovery of the gene causing Huntington's disease. As Higgins Professor of Neuropsychology at Columbia University and President of the Huntington's Disease Foundation, she has spent over four decades at the forefront of human genetics, bridging research and patient advocacy. Wexler's achievements have been recognized with the Benjamin Franklin Medal in Life Science, the Albert J. Lasker Award for Public Service, and election to the National Academy of Arts and Sciences. Wexler currently resides in New York, NY.

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