Although I don’t consider having a chronic illness like cystic fibrosis a good thing, I accept it and I think others should, too.
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I grew up thinking I would never be able to have children because of my CF. While advancements in treatments have made motherhood a possibility for many, I ultimately made the painful decision to not have children.
Dr. Steven Rowe will support mission to cure cystic fibrosis by leading the Foundation’s research strategy, focusing on genetic therapies
My brother, Josh, who has cystic fibrosis has been through more struggles than anyone I know, but he has always kept a positive attitude -- even while awaiting a lung transplant. This outlook on life inspires me and helps me see the best case in any outcome.
Not only am I a member of the CF community, but I’m also a member of the clinical community — an oncology nurse — and I have had to endure hard lessons to learn to advocate for myself and get the medical care I need.
I have had a fortunate life with cystic fibrosis given the fact that I married, had two kids, and a career. However, with increasing — and sometimes bewildering — health issues, I’m beginning to wonder whether it’s my CF or just aging, or something in between.
With this approval, approximately 2,250 children in the U.S. will be eligible for Trikafta® (elexacaftor/tezacaftor/ivacaftor), including more than 900 who will have access to a CFTR modulator for the first time. The Cystic Fibrosis Foundation believes it is beneficial to start people with cystic fibrosis on modulators as early as possible to help prevent lung damage and the onset of complications.
Proposed policies would impose significant barriers and add burden for people with CF
Groups urging need for revitalizing antimicrobial development call for passage of the bill this year