I remember the first CFRI educational conference I attended. This was decades ago. I was a young adult with CF and had recently moved to the Bay Area from Nebraska. I didn’t know a living soul with CF outside of my family. Wh [...]

A funny thing happened right around the time I sat down to write about my experience with CFRI’s Adult CF Retreat. Although it’s existed for nearly 30 years, evolving to provide those of us fighting Cystic Fibrosis with a saf [...]

My journey as a cystic fibrosis advocate began the moment my son, Aiden, was diagnosed with CF through newborn screening in 2017. Aiden was just a few weeks old, and I was suddenly thrust into a world filled with new challeng [...]

The diagnosis changed everything for me. It was the moment my world shifted and everything I knew about parenting and strength was redefined. I never imagined that raising my child would look like this. My days on parental le [...]

People with cystic fibrosis (CF) are at an increased risk of incontinence. Incontinence is the leakage of urine or fecal matter when coughing, laughing, exercising, or engaging in other activities. Coughing associated with CF [...]

Hormones seem to be a mysterious, unknown part of chronic illness care unless you are talking about reproduction or diabetes. This MUST change. Hormones aren't just about sex, erections, and pregnancy. They allow the entire b [...]

Cystic fibrosis (CF) presents a wide range of challenges, and no one understands them more intimately than those living with the condition. As someone diagnosed with CF at just two weeks old, I’ve come to know my body better [...]

Being a caregiver to one’s parents is an experience many with cystic fibrosis (CF) never get to face. We are used to being cared for. With all our medications, nebulizer treatments, and hospitalizations growing up—and for som [...]

Having Cystic Fibrosis means a life of many unpredictable ups and downs. It also means hours of commitment to treatments and a healthy lifestyle. This can be overwhelming, especially when transitioning to young adulthood. My [...]

April is organ donation awareness month and the need for organs keeps growing every year.  Transplant is not something every patient with cystic fibrosis (CF) will face. Though modulators, especially Trikafta, have meant [...]