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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Today, I no longer feel tied to a hospital bed and a grim diagnosis, and I have you to thank.
July 28, 2015
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2 min read
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More than 800 guests gathered to celebrate the therapeutic benefits that surfing brings to people with CF at the 8th annual Pipeline to a Cure gala.
July 27, 2015
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1 min read
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Finding out I had a terminal illness my junior year of high school was a life change I was not prepared for. And as my life and relationships change, I'm learning that the journey to acceptance never ends.
July 27, 2015
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4 min read
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I was thrilled to learn earlier this month that Emily Kramer-Golinkoff, a young woman living with cystic fibrosis, would be honored by the White House as a “Champion of Change” for her work to advance the field of personalized medicine.
July 24, 2015
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3 min read
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An inside look at the inspiration and purpose behind our new CF Community Blog.
July 24, 2015
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2 min read
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Earlier this month, we learned that the new CF drug Orkambi was approved by the FDA. This was such an exciting, memorable and emotional day for everyone in the CF community. We heard from many who were thrilled about the potential for this drug to help people with CF and also heard from those who would not benefit from this breakthrough. Following are some reactions from those this impacts the most: people with CF and their loved ones.
July 22, 2015
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5 min read