At 50 years old, my health began to deteriorate in ways no one could explain. For nearly two decades, I searched for answers. It wasn’t until I was 69 that I finally learned the truth: I have cystic ...
For those who don’t benefit from modulators, the fight against CF can feel isolating and uncertain. Five members of our community share how they’ve transformed their personal struggles into purpose — ...
My childhood was made up of adventures. Parasailing over the Gulf of Mexico, hot air balloon rides into the sunset, snorkeling in caves with stalactites hanging over head, and reaching the top of the ...
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 ...
I was diagnosed with cystic fibrosis at birth, and in October 2019, I underwent a double-lung transplant. I wrote a song called “Forever Changed” as a letter to my younger self and my selfless organ ...
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 ...
For more than 25 years, people with cystic fibrosis and their loved ones have helped raise awareness, support, and understanding of CF in the United States through national recognition events. Today, ...
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 ...
BETHESDA, Md. — The Cystic Fibrosis Foundation issued the following statement in response to the recent announcement by the National Institutes of Health (NIH) that it will set the reimbursement rate ...
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 ...
The drug company Corbus Pharmaceuticals will start its next Phase 2 clinical trial to test a potential inflammation-targeting drug in people with cystic fibrosis in the first quarter of 2018. The ...
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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