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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As co-chair of ResearchCon, I had the opportunity to work with other members of the cystic fibrosis community to help set the agenda for a virtual research conference on CF infections. The event left me in awe of the scientists and the work being done around the world to fight this disease.
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In the fall of 2017, I was asked to join the Advanced Lung Disease Guidelines Committee as a parent representative because of my work as a member of Community Voice. I was honored and said, “Yes!” I am so pleased I did, because my experience gave me great hope and valuable insight into the dedication that goes into improving cystic fibrosis care.
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Everyone with cystic fibrosis faces the fear that their next infection could be the one that doesn't respond to treatments. Chronic infections eventually led to my sister's death. After seeing what she went through, it became clear to me that we have an immediate need for better anti-infectives.
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As a professional vocalist, for most of my life I tried to hide my CF. But, after opening up about my disease and creating a program to help others through singing, I realized just how powerful my voice really is.
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After I was diagnosed with cystic fibrosis at the age of 21, I was eventually able to find a way to involve myself in the CF community by doing something I loved -- golfing. Along the way, I met some incredible people who showed me the importance of chasing the moment.
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People in the CF community do so much every day. Beyond doing treatments, going to clinic appointments, and doing countless other things to stay healthy, some of you are writing books and music to help others with CF and give thanks for your loved ones. Read about what three people with CF have created this year.
