I parked outside a library, where I’d planned to work for the day, at 7 a.m. in freezing 40-degree weather (I was raised in Hawaii). The library wouldn’t open for four more hours, and I was too tired to drive elsewhere, so I turned on my car’s heater…
Victorious - a Column by Brad Dell
The cystic fibrosis community gets buzzing at the news of a successful Vertex trial or when a well-respected researcher even casually mentions the word “marijuana.” When a trailer for a fictional romance movie about cystic fibrosis was released, our community was more of an angry swarm than…
Well, it finally happened: Twenty-two months after my double-lung transplant, I finally got sick for the first time. I gotta say, with a suppressed immune system, illness isn’t so lovely. I saw the docs last Tuesday, and they ran a panel of tests. No…
The 2018 North American Cystic Fibrosis Conference (NACFC) in Denver was rad, huh? The Cystic Fibrosis Foundation (CFF) is making great strides in the inclusion of patient voices, which has led to a selection of initiatives based on our feedback. Over the next five years, the foundation…
It’s World Mental Health Day! Well, it won’t be when you read this. But it is as I write this. I posted some confessions on Instagram about my struggles with mental health, and I got a bunch of incredibly kind messages from friends saying they…
I’ve been single for a year now, and I’m darn proud of it. I didn’t think I could do it, and I’ve grown so much because of it. From ages 17 to 24, I was with a wonderful person. It was us against the destructive titan, cystic fibrosis.
Fall 2010 I’ll never forget the morning I couldn’t understand what my friends said as we waited for classes to begin. I’ll never forget calling Mom, phone pressed to my right ear, and not understanding what she said, either. Or my heaving sobs as friends…
Wednesday’s evening air was heavy. It was as if Atlas kneeled and tugged the sky down with him. I drove through the California hills and beaches of Santa Cruz for hours, searching for anything that could relieve my inexplicable despair. While driving, I remembered the month before, when I sat…
I’m a positive guy, I swear it. But I’m exhausted and need a good vent. *** When I pay about $100 per week for prescription medicine, I feel punished for having a genetic defect. I loathe that my body actively tries to murder itself against the…
Friends. Today, my message is simple. Your quality of life matters. Quality of life is integral to physical health Inevitably, you will face trials that require quality of life sacrifices for survival. “Sacrifice” is a carefully chosen word, in the way one might sacrifice a legion to win…
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