The event, entitled “
The briefing was co-sponsored by Senators Edward Markey (D-Mass.) and Kelly A. Ayotte (R-NH) and Congressional Cystic Fibrosis Caucus co-chairs Representatives Tom Marino (R-PA) and James McGovern (D-Mass). Panelists included Terence R. Flotte, M.D., dean of the University of Massachusetts Medical School; Carlos Perez, M.D., director of the Cystic Fibrosis Care Center at Geisinger Medical Center in Danville, Penn.; Paul Negulescu, Ph.D., vice president for research at Vertex Pharmaceuticals; and Megan Stacy, who has cystic fibrosis.
Life expectancy of a child with CF has doubled in the last 30 years, because of the CF Foundation's efforts to improve care and spur drug development.
“Our progress in the search for new treatments and a cure is due in large part to collaboration across sectors -- government, academia, industry, the medical community, and patients and their families,” said Robert J. Beall, Ph.D., president and CEO of the Foundation. “Because of their efforts, we continue to make a lifesaving difference for people with cystic fibrosis.”
“I'm 29 years old and was diagnosed in 1985. The outlook was much tougher then,” said panelist Megan Stacy. “It's because of the research and integrated care that I'm able to sit here today.”
The Foundation funds and accredits more than 110 cystic fibrosis care centers nationwide. The National Institutes of Health has cited the CF care center network as a model of effective and efficient health care delivery for a
The Foundation's innovative drug development model has resulted in a robust pipeline of therapies that attack the disease from every angle, including those that target the root
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