Recommended by Bill Gates and included in GatesNotes
Longlisted for the PEN/E.O. Wilson Literary Science Writing Award
"Elaborating on the science as well as the business behind the fight against cystic fibrosis, Trivedi captures the emotions of the families, doctors, and scientists involved in the clinical trials and their 'weeping with joy' as new drugs are approved, and shows how cystic fibrosis, once a 'death sentence,' became, for many, a manageable condition. This is a rewarding and challenging work."
Cystic fibrosis was once a mysterious disease that killed infants and children. Now it could be the key to healing millions with genetic diseases of every type—from Alzheimer's and Parkinson's to diabetes and sickle cell anemia.
In 1974, Joey O'Donnell was born with strange symptoms. His insatiable appetite, incessant vomiting, and a relentless cough—which shook his tiny, fragile body and made it difficult to draw 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 cystic fibrosis, an inherited lung disorder that would most likely kill him before his first birthday.
The gene and mutation responsible for CF were found in 1989—discoveries that promised to lead to a cure for kids like Joey. But treatments unexpectedly failed and CF was deemed incurable. It was only after the Cystic Fibrosis Foundation, a grassroots organization founded by parents, formed an unprecedented partnership with a fledgling biotech company that transformative leaps in drug development were harnessed to produce groundbreaking new treatments: pills that could fix the crippled protein at the root of this deadly disease.
From science writer Bijal P. Trivedi, Breath from Salt chronicles the riveting saga of cystic fibrosis, from its ancient origins to its identification in the dank autopsy room of a hospital basement, and from the CF gene's celebrated status as one of the first human disease genes ever discovered to the groundbreaking targeted genetic therapies that now promise to cure it.
Told from the perspectives of the patients, families, physicians, scientists, and philanthropists fighting on the front lines, Breath from Salt is a remarkable story of unlikely scientific and medical firsts, of setbacks and successes, and of people who refused to give up hope—and a fascinating peek into the future of genetics and medicine.
|Publisher:||BenBella Books, Inc.|
|Product dimensions:||6.10(w) x 9.10(h) x 1.80(d)|
About the Author
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, and 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.
Table of Contents
Part IChapter 1: Hello, Joey 1974Chapter 2: The Treatment Plan 1974Chapter 3: Case 44: Babies Hospital, New York City 1935Chapter 4: A New Disease 1936–1937Chapter 5: An Equal Opportunity Disease 1938–1942Chapter 6: Christmas Homecoming 1974–1977Chapter 7: The Sweat Test 1943–1960Chapter 8: A Tribe of Desperate Parents 1950–1955Chapter 9: Lessons from Polio 1955–1960Chapter 10: The Registry 1960–1966Chapter 11: The Therapist 1977Chapter 12: A Disease in Search of Ideas 1964–1980Chapter 13: The Hitman Cometh 1979–1982Chapter 14: Salt and Water 1970–1981Chapter 15: Salty Boy 1981–1983Chapter 16: Birth of an Advocate 1984 Chapter 17: Out of Many, One 1978–1984
Part 2Chapter 18: The Gene Hunters 1980–1984Chapter 19: Lucky Number Seven 1984–1985Chapter 20: Kate 1986Chapter 21: To Screen or Not to Screen Newborns 1985Chapter 22: Michigan 1985Chapter 23: Joey’s Long Goodbye 1986Chapter 24: Mad Pursuit 1987Chapter 25: The Gene 1989Chapter 26: Runny, Like Water 1989–1994Chapter 27: Venture Philanthropy—A New Way to Fund Drug Development 1977–1999Chapter 28: The Gene Is the Medicine 1989–1991Chapter 29: Transforming the Lungs 1992–2003Chapter 30: First-in-Human Trials 1992–1993Chapter 31: The Beall Curve 1996
Part 3Chapter 32: The Joey Fund 1989–1999Chapter 33: A Network for Developing Therapeutic Drugs 1997–1998Chapter 34: Aurora 1998–1999Chapter 35: The Gates Open 1987–2000Chapter 36: A Tale of Four Families—CF in the New Millennium 1999Chapter 37: The Takeover 2001Chapter 38: Getting the Band Together 2001–2003Chapter 39: Pay to Play 2002–2004Chapter 40: Molecular Architects of Vertex West 2004–2005Chapter 41: Rat to Man 2003–2004Chapter 42: A Christmas Gift 2004–2005Chapter 43: The Lucky Four 2005–2007Chapter 44: The Doorman Launches the Era of Genetic Medicine 2007–2008Chapter 45: Disruption Fall 2008Chapter 46: Tasting like Average People 2010–2012Chapter 47: Milestones to a Cure 2004–2015Chapter 48: Tackling the Common Mutation 2004–2013Chapter 49: What Mutation Are You? 2013–2014Chapter 50: The Mother of All Deals 2014Chapter 51: Very Personal Clinical Trials 2021–2017Chapter 52: The Triple 2015–2017Chapter 53: The Home Stretch 2018Chapter 54: The Leftovers 2015–2020Chapter 55: A New Generation 2017–2020
AcknowledgmentsTimelineEndnotesAbout the Author
What People are Saying About This
"I couldn't put the book down."
“A thorough and engrossing saga packed with information, Breath from Salt is really about the transformative power of hope. It arrives at just the right moment, when too many of us have forgotten what human faith, ingenuity, and relentless determination can accomplish.”
—Dan Fagin, author of the Pulitzer Prize–winning Toms River
“Beautifully written, Breath from Salt brings to life the amazing story of a passionate community that dared to dream, work together, and take extraordinary risks to bring life-saving treatments to those with cystic fibrosis. Timely and important, the breakthroughs described in this book are likely to accelerate cures for many other genetic diseases.”
—Dr. Preston W. Campbell, former president and CEO of the Cystic Fibrosis Foundation