Persistence, resilience, and strength of character can overcome many obstacles in life. Marlene Pryson, 86, probably one of the oldest individuals living with cystic fibrosis, certainly possesses all ...
The U.S. Food and Drug Administration has approved the use of ivacaftor (Kalydeco®) for children as young as 6 months. The U.S. Food and Drug Administration (FDA) has approved the use of ivacaftor ...
I wasn’t supposed to make it this far. I was born six weeks early, to parents who weren’t ready. They fought constantly, partied hard, and eventually split up. My sister went with my dad, and I stayed ...
BETHESDA, Md. (July 16, 2025) – Today, the Cystic Fibrosis Foundation announced an additional investment of up to $24 million in Prime Medicine to continue the development of a gene editing therapy ...
I would have argued the newborn screening result until my face turned blue. There was no way my baby had cystic fibrosis. My prenatal screening was negative, and I believed it showed that my son was ...
BETHESDA, Md. (May 13, 2025) — As Congress considers deep cuts to Medicaid as part of budget reconciliation, the Cystic Fibrosis Foundation issues the following statement: The CF Foundation expresses ...
Despite its prevalence and impact, there is no CF-specific guidance for the assessment and management of pain. The Cystic Fibrosis Foundation assembled an expert panel of clinicians, researchers, ...
This blog discusses suicide and suicidal ideation. If you or someone you know is suicidal, please contact your physician, go to your local ER, or call/text the National Suicide Prevention Lifeline at ...
I’ve been a sleepy gal my whole life. If given the option to watch a movie or take a nap, I’ll choose the nap almost every time. I’m very sleep dependent. I don’t operate well if I don’t get good ...
Becoming friends with Maddie, who has cystic fibrosis, inspired me to begin raising CF awareness and fundraising from a young age. Now I’m eager to make a larger impact with the platform I have since ...
Our family’s journey has been a rollercoaster of challenges and triumphs since we welcomed our goofy boy, Owen, into the world. Now 20 months old, Owen’s life has already been marked by medical ...
A friend recently asked me how I became an expert on managing my personal expenses and medical bills. First and foremost, while I do not consider myself an expert, living with cystic fibrosis for 42 ...
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