It was December 2002, Christmas break. My son, Nathan, was 7, and the lights blinking across the living room haloed his skinny frame. Stomping in, he planted his fists on his hips, nailed his feet ...
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 Our 5-year-old daughter, Olivia, had become inconsolable and withdrawn, and was saying words that no ...
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 ...
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 ...
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 ...
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 ...
The Cystic Fibrosis Foundation is funding the development of a gene editing therapy that is designed to use ReCode’s tissue-specific delivery vehicle to transport gene editing cargo to the lung cells ...
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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