Breath from Salt: A Deadly Genetic Disease, a New Era in Science, and the Patients and Families Who Changed Medicine Forever

Science journalist Trivedi debuts with a glowing account of how Boston businessman Joe O’Donnell, after losing a son to cystic fibrosis in 1986, raised hundreds of millions for the Cystic Fibrosis Foundation, which pioneered the use of “venture philanthropy” for drug discovery. Trivedi covers low points in O’Donnell’s story (early on, when still struggling to keep his son alive, O’Donnell had “a sick child gasping for breath, a mortgage, no job, no health insurance, and no backup plan”) as well as his triumphs, as he became a powerful businessman and worked with the Cystic Fibrosis Foundation to fund groundbreaking research. Most notably, this included a well-placed investment in Vertex Pharmaceuticals, which in 2012 pioneered the first of several treatments involving drugs matched to patients’ individual gene mutations. 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. Agent: Ethan Bassoff, Ross Yoon. (Sept.) Correction: This review has been updated to clarify Joe O'Donnell's role with the Cystic Fibrosis Foundation.