Meb Keflezighi, one of the world's best runners, joined Lee University and ran in the 65 Roses 5K in Cleveland, Tenn. to support the fight against cystic fibrosis. Lee University was thrilled to welcome him as part of its longstanding tradition of raising funds in support of the CF Foundation's mission.
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More than 200 advocates from 32 states traveled to Washington, D.C., on June 28 for the Cystic Fibrosis Foundation's 10th annual Teen Advocacy Day, which enabled teens to meet with their elected officials on Capitol Hill to fight for access to high-quality, specialized care for their friends and loved ones living with CF.
The Cystic Fibrosis Foundation has followed the health care reform discussion closely. While the Foundation has not taken a position on any particular health reform bill, we have consistently and aggressively encouraged officials to include specific reforms that are important for the treatment of cystic fibrosis.
The Institute for Clinical and Economic Review (ICER) developed an assessment of the comparative clinical effectiveness and value of cystic fibrosis therapies. The Foundation provided input to help inform this process.
PTC Therapeutics has discontinued development of ataluren as a potential treatment for people with cystic fibrosis caused by a nonsense mutation. The Cystic Fibrosis Foundation is supporting efforts to pursue treatments for people with CF who have a nonsense, splicing or other rare mutations.