The physical symptoms of cystic fibrosis can be debilitating. But the emotional trauma brought on by hurtful comments, financial burdens, and anguish my loved ones have faced because of my disease has been just as painful.
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Here's a snapshot of six works we're spotlighting from members of the CF community. Whether they shared their story through writing or through song, their work has been shaped by their experiences of living with CF.
William Skach, MD, Chief Scientific Officer, will retire from the CF Foundation this summer.
At 86, Marlene Pryson may be one of the oldest individuals living with cystic fibrosis. During her long life, she has dedicated many years of service to helping CF families as a CF clinic coordinator and family liaison.
The Cystic Fibrosis Foundation celebrates the decision issued by the United States Supreme Court in California v. Texas, ultimately protecting the Affordable Care Act.
Researchers' catalog of airway cell types could reveal targets for future genetic therapies
The U.S. Food and Drug Administration has approved the use of Trikafta® (elexacaftor/tezacaftor/ivacaftor) for children ages 6 through 11 who have at least one copy of the F508del mutation or certain mutations in the CFTR gene that are responsive based on lab data.
Today, Vertex Pharmaceuticals Inc. announced that the U.S. Food and Drug Administration has accepted its application to expand Trikafta® (elexacaftor/tezacaftor/ivacaftor) to include children ages 6-11 years old with cystic fibrosis who have at least one F508del or a mutation in the CFTR gene that is responsive based on in vitro data. The FDA has granted priority review of the application and has indicated that it will make a decision by June 8, 2021.
Foundation welcomes new members to advance its mission
The Cystic Fibrosis Foundation recently submitted comments to the National Institutes of Health on improving racial equity, diversity, and inclusion in the biomedical research workforce.