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CF In the Media

Doorway to a Cure - A Nonprofit is Taking a Financial Gamble on Eradicating Cystic Fibrosis

September 2013 | Discover Magazine

For the first time in over a decade, a striking silence fills the Cheevers’ barn-style home in North Andover, Mass. The deep, rumbling cough that plagued sisters Laura, 14, and Cate, 12, every night of their lives, leaving them exhausted and weak, has finally stopped. Their bodies are almost free of the lifethreatening lung infections — requiring hospitalization and harsh organ-pummeling intravenous antibiotics — which end the lives of so many children with cystic fibrosis. Now calories once spent fighting disease add weight on their dainty frames and give them energy to play soccer and dance. “And,” says Rob Cheevers, Laura and Cate’s father, “they don’t taste salty anymore.”

“Yeah, I taste like an average person,” quips Cate, referring to the salty sweat that is a hallmark of the disease.

Laura and Cate are among thousands of Americans who have cystic fibrosis (CF), an inherited disease that clogs the lungs with thick mucus, encouraging chronic infections that eventually kill. Affecting one in every 3,900 births in the U.S., CF is one of the most common genetic disorders known. Yet it afflicts too few people — just 30,000 in America and an estimated 70,000 worldwide — for industry to recoup the enormous cost of developing drugs for the disease.

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