The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.
Now that I am feeling healthy on Trikafta®, I no longer feel special for thriving despite the challenges of cystic fibrosis. I don’t feel like I belong in the CF community anymore, and I miss that sense of camaraderie that comes from a shared struggle.
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Having a friend with cystic fibrosis has made me determined to do all that I can to help her fight for a cure. That includes leading the charge for making legacy donations to the Cystic Fibrosis Foundation.
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Our dream for our daughter, Eden, is the same one that parents have for their kids who don't have cystic fibrosis. We want her to be happy and realize her true potential.
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As I reflect on the 30th anniversary of Great Strides and my 35-year journey living with cystic fibrosis, I celebrate all the CF community has accomplished together and am thankful to be able to share my story as a 2018 National Ambassador.
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With another fantastic Volunteer Leadership Conference (VLC) in the books, I want to share some of the things we learned and how we can keep the momentum going through National Volunteer Week, and all year long.
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Caring for somebody with CF used to be a lonely journey. But that changed after I attended the first Volunteer Leadership Conference (VLC). I have attended the conference every year, and this year as a co-chair of the 15th VLC, I'm welcoming everybody to livestream it so we can share and learn together.
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The night of our first cystic fibrosis-related fundraising gala was memorable in more ways than one. Thanks to new friendships, I got the chance to honor my daughter with CF in a special way.
