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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If you have cystic fibrosis like I do, then you know how important it is to protect our health care. That's why we must advocate for three key policy principles that are critical to allowing people with CF to access the high-quality, specialized care we need.
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For people with cystic fibrosis, our story is the most powerful tool we have to stand up for ourselves and fight for our needs. Although I can't always be there to share my story with legislators in person, I'll be joining many others from the CF community for our first March on the Hill Online Day of Action to make my voice heard.
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As Congress debates how to stabilize the health insurance marketplaces, several proposals would directly improve the ability of people with cystic fibrosis to access high quality, specialized care.
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With several successes for the cystic fibrosis community over the past several months, advocacy is as important as ever to preserving our progress and working toward a cure.
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I didn't always think that Teen Advocacy Day could make a difference. Turns out I was wrong.
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I never realized how important it was to share my family's story of cystic fibrosis until I started participating in Teen Advocacy Day. This experience helped me find my voice.
