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Breath from Salt

By Bijal Trivedi

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From award-winning journalist Bijal Trivedi, the poignant, fascinating story of how one young boy’s illness forever altered the landscape of medicine and laid the foundation for a new era of personalized, genetically based treatments, giving hope to millions who suffer from debilitating diseases.

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Publication Date: January 2020

Publication Date: January 2020

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COMING JANUARY 2020

Cystic fibrosis was once a mysterious death sentence. Now, it could be the key to healing millions with genetic diseases of every type.

In 1974, a boy named Joey O’Donnell was born. His strange symptoms—insatiable appetite, relentless vomiting, and an incessant cough that shook his tiny, fragile body, making it difficult to draw a breath—confounded doctors and caused his parents agonizing, sleepless nights. After six sickly months, his salty skin provided the critical clue. He was one of thousands of Americans with an inherited lung disorder, cystic fibrosis, which would most likely kill him before his first birthday.

In nearly 40 years between the discovery of cystic fibrosis and Joey’s birth, there had been little progress toward effective treatment, much less a cure. Even after discovering the gene and mutation responsible for causing the disease in 1989, and breakthroughs in how molecules were tested for therapeutic potential, a treatment remained elusive. It was only after the Cystic Fibrosis Foundation formed an unprecedented partnership with a fledgling biotech company that these transformative leaps were harnessed to produce a revolutionary new type of drug—a molecule that could fix the crippled protein at the root of this deadly disease.

Now, for the first time in the history of medicine, scientists have designed personalized drugs to treat this heritable disease. Babies born with cystic fibrosis mutations that killed children for millennia are expected to live rich, healthy, normal lives—have children of their own and become grandparents themselves. What worked for cystic fibrosis is now being applied to diseases from Alzheimer’s and Parkinson’s to diabetes and sickle cell anemia.

Breath from Salt chronicles the riveting saga of cystic fibrosis from an ancient disease arising 5,000 years ago to its identification during autopsies in dank hospital basements, from its celebrated status as one of the first human disease genes ever discovered to the groundbreaking targeted genetic therapies that now promise to cure it. It tells how a small group of desperate but determined parents without science, money, or hope pioneered a new way of funding medicines through venture philanthropy and helped form one of the most influential non-profits in the world, a case study in innovation, hubris, and determination.

Told from the perspective of the patients, families, physicians, scientists and entrepreneurs who have fought on the front lines of this disease, it is a captivating and remarkable story of unlikely scientific and medical firsts, of setbacks and success, and of people who refused to give up hope after losing beloved children and friends, and when failure seemed inevitable.

Through this intimate portrait of a heroic community, Breath from Salt provides a fascinating peek into the future of genetics and medicine.

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About the Author

Bijal Trivedi

Bijal P. Trivedi is an award-winning freelance writer specializing in medicine and health. Her work has taken her from the hidden vaults of New York’s Metropolitan Museum of Art to the Serengeti Plains to Moscow’s Star City, where she blasted off with space tourism entrepreneurs on the “Vomit Comet” for astronaut training. Her work has appeared in Discover, Scientific American, New Scientist, Wired, The Economist, National Geographic, Science, Self, Nature, among others. Her feature “The Wipeout Gene” was anthologized in The Best American Science and Nature Writing: 2012. Trivedi is the former editor of the NIH Director’s Blog, which shares compelling, cutting edge biomedical research with the general public. Trivedi also worked as a writer and editor for the National Geographic News Service, a wire service she helped launch in partnership with the New York Times Syndicate.

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Publication Details

Format: E-book Epub

Publication Date: January 14, 2020

Format: E-book Mobi

Publication Date: January 14, 2020

Format: Hardcover

Dimensions: 6 x 9 x 1 in.

Weight: 1 lbs.

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