Blog

We were heartbroken to learn our newborn needed surgery right after birth and felt unprepared for the cystic fibrosis diagnosis that soon followed. Now, six months and five surgeries later, her strength and resilience turned our fears into profound gratitude and love.  

So much of my life was spent dealing with CF in silence. It wasn’t until I heard the stories of other people with CF that I realized the weight of what I’d been carrying. 

When my son was diagnosed with cystic fibrosis, it was a shocking experience that distanced us from our family and highlighted the taboo topics our culture avoids. Thankfully, we discovered support within the CF community.

As a person with cystic fibrosis who can’t benefit from modulators, I believe it is my responsibility to use my position on a Cystic Fibrosis Foundation research committee to advocate for others like me. I take my role as a patient representative seriously and try to keep up to date on health issues that matter most to people with CF. 

Growing up with cystic fibrosis made it difficult for me to have hope for the future. However, thanks to a healthy combination of physical and mental health medications, I now have so much to look forward to.

Each year, researchers and care team members gather at the North American Cystic Fibrosis Conference to share their research on how to improve the lives of people with cystic fibrosis. The three keynote speeches, or plenaries, cover the most important advances in research and care.