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.
Having an atypical presentation of CF means I stand somewhere between the CF world and the rest of the world — and that makes me feel like I belong in neither.
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Although I was disappointed that the Volunteer Leadership Conference was transformed into a virtual event this year, I know that this was the best decision to keep the cystic fibrosis community safe during the coronavirus outbreak.
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Here's a snapshot of six works we're spotlighting from members of the CF community. Whether they shared their story through writing, a podcast, or video, their work has been shaped by their experiences of living with CF. Learn what creating these works has meant for them and what readers and listeners can take away.
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When the news of the Trikafta™ approval came out, I was simultaneously excited for people with CF that would benefit and disappointed that another new medicine is passing me by. But, hearing about the next wave of research into a cure for ALL people with CF has me looking forward to the future.
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We're spotlighting two authors who have written books based on their experiences with cystic fibrosis. Learn what the experience of writing them has meant for them, and what they hope their readers will get from reading their stories.
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Even though nobody close to me had cystic fibrosis, I decided to try to make a difference in the lives of people with CF.
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When I first learned that my two sons had cystic fibrosis nearly 20 years ago, I barely understood the disease, let alone how to fight back. After contacting the Foundation, I learned just how easy it was to make my voice heard through volunteering.
