I never expected a simple musical hobby to introduce me to a global community of resilient and optimistic individuals. Each week, I now have the pleasure of interacting with those with CF around the ...

For decades, I’ve fought for my sons who were diagnosed late with cystic fibrosis and still face barriers to life-saving treatments. I continue to fight every day — taking no days off — because no ...

While relocating to a new state, my family faced some unexpected hurdles. But with the incredible support of our community, we survived the journey.

I remember the exact moment we realized Trikafta wasn’t the miracle drug we hoped it would be. Our 5-year-old daughter, Olivia, had become inconsolable and withdrawn, and was saying words that no ...

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 ...

When I tell people I’m training for a full Ironman competition, their reactions range from raised eyebrows to outright disbelief. It involves swimming 2.4 miles, biking 112 miles, then running a full ...

Hearing the words cystic fibrosis can be a lot for first-time parents — or any parent. In the fall of 2019, my husband David and I showed up for an OB-GYN appointment. I was about 11 weeks pregnant ...

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 ...

For most CFers, we just want to be “normal” but sometimes you must be careful what you wish for. I was unprepared for adulthood. Once comfortable with the idea of dying young, I now struggle to adapt ...