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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Along with experiencing the typical emotions every parent has when their kids start school, I've also had to teach my son, Maddox, to take responsibility for his cystic fibrosis.
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Using social media helps me cope with raising a child with cystic fibrosis, but I have to remember that it's not just my story I'm sharing. Here's how I make sure I share the right parts of my son's CF journey.
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Don't let the internet fire hose of CF information overwhelm you. As a mother to two children with cystic fibrosis, I can give you some tips on avoiding common pitfalls.
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After my son was diagnosed with cystic fibrosis, I was stunned by some of the insensitive questions and comments I received from friends and family. Over time, I learned that their unsolicited feedback provided teachable moments that I hope to pass along to other families.
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I wrote this poem to my daughter as I watched over her in the hospital.
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Spending summers at sleep-away camp helped me become more responsible, and allowed me to see CF clearly and accept it.