As a mother of three sons with cystic fibrosis, Mary along with her husband, Harry, was determined to do all she could to find a cure.
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The Cystic Fibrosis Foundation hosted a Congressional briefing on February 11 to discuss the benefits of the Foundation's model of specialized, coordinated care and its innovative strategies for drug development, and how they can serve as an example for other rare, chronic diseases.
Cystic Fibrosis Foundation Vice President of Therapeutics Development Dr. Michael Boyle testified today at a hearing in front of the House Energy and Commerce Committee's Subcommittee on Health. He urged members to support H.R. 209, the Ensuring Access to Clinical Trials Act (EACT), which would make permanent a law enabling people to participate in clinical trials without the fear of losing critical benefits.
The Cystic Fibrosis Foundation has been carefully following the story of a 10-year-old girl with cystic fibrosis who has severe lung disease and has been on a pediatric lung transplant list for 18 months. Her family has organized an online petition and filed a lawsuit to help her receive an adult donor lung.
Garry Shandling leaves a legacy gift to the Foundation in honor of his late brother, who had cystic fibrosis.