One of the hardest parts of working full-time with cystic fibrosis is the quiet exhaustion of navigating systems and expectations that were never designed for chronic illness.

I lived for decades struggling to breathe, adapting my life around what I thought were severe allergies. Then I was finally diagnosed with cystic fibrosis. With proper treatment and perseverance, I’ve ...

For years, I carried a collection of unexplained health issues that never quite added up. I didn’t cough, I didn’t wheeze, and nothing about me fit the traditional picture of cystic fibrosis. So when ...

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 Our 5-year-old daughter, Olivia, had become inconsolable and withdrawn, and was saying words that no ...

This blog contains content about an eating disorder. If you or someone you know has an eating disorder, contact the National Eating Disorders Association helpline by calling 1-800-931-2237.

Today, in honor of World Oxygen Day (October 2), leading patient, provider, and professional organizations are amplifying the voices of people on supplemental oxygen to stress the critical importance ...

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 ...

Cystic fibrosis has been a very big part of my life since 1965, when my 4-year-old son was first diagnosed with this terrible disease. I had never even heard of it before. I was 28 years old then.

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 ...

On behalf of the 272 undersigned organizations committed to the health of our nation’s mothers, infants, children, and families, we express our deep concern over the Administration’s recent decision ...