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.
Dr. Jennifer Taylor-Cousar is passionate about bringing attention to health inequities in cystic fibrosis. By partnering with the CF Foundation, other organizations, and the CF community, she believes we can work together to create equitable health outcomes for everyone with CF.
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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
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I remember the first time that I understood that cystic fibrosis made me different.
July 20, 2015
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6 min read
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Today, my son Eric turns 24. He has his own house. He has a career in finance at Merrill Lynch. He has cystic fibrosis.
July 17, 2015
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5 min read
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For adult with CF Brent Pace, staying healthy isn't about avoiding life. It's about living mindfully.
July 16, 2015
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2 min read
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Dr. Skach discusses the latest advances in CF research and exciting new approaches to address the underlying cause of the disease.
July 15, 2015
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4 min read
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CF Foundation Public Policy interns Shannon, Oakey and Erin share highlights from attending Teen Advocacy Day 2015, where 62 teens from across the country traveled to Washington, D.C., to meet with their Representatives and advocate on behalf of their siblings, friends and relatives with CF.
July 14, 2015
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2 min read