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.
![Zanny flexing her bicep which has a PICC line in it](/sites/default/files/styles/image_card/public/2024-04/Zanny-Steffgen-Featured-Image.png?h=8abcec71&itok=Fr7k5PvA)
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.
![A professional headshot of Zanny Steffgen](/sites/default/files/styles/author_thumbnail/public/2024-04/Zanny-Steffgen-Headshot.png?itok=oD3iLvkp)
![Aidan holding up a peace sign outside of his college building.](/sites/default/files/styles/image_card/public/2022-09/Megan-Neville-Featured.png?h=de17517d&itok=0DxCslB5)
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I began fundraising and raising CF awareness soon after my son, Aidan, was diagnosed as a baby. After years of successful fundraiser walks, Aidan asked me to stop — opening my eyes to the difference between being a mom of someone with CF and being the person who is living with CF.
![Megan Neville](/sites/default/files/styles/author_thumbnail/public/2022-09/Megan-Neville-Headshot.png?itok=KCeN5LXn)
![Jonathan-McTague-Great-Strides-With-Friends-Featured-Rectangle](/sites/default/files/styles/image_card/public/2021-09/Jonathan-McTague-Great-Strides-With-Friends-Featured-Rectangle.jpg?itok=88d-Na5Z)
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Having a friend with cystic fibrosis has made me determined to do all that I can to help her fight for a cure. That includes leading the charge for making legacy donations to the Cystic Fibrosis Foundation.
![Jonathan-McTague-Headshot](/sites/default/files/styles/author_thumbnail/public/2021-09/Jonathan-McTague-Headshot.jpg?itok=4qJR-Q-n)
![Emili-Combest-Treatments-Family-Featured-Rectangle](/sites/default/files/styles/image_card/public/2021-09/Emili-Combest-Treatments-Family-Featured-Rectangle.jpg?itok=BEwP3l-s)
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Our dream for our daughter, Eden, is the same one that parents have for their kids who don't have cystic fibrosis. We want her to be happy and realize her true potential.
![Emili-Combest-Headshot](/sites/default/files/styles/author_thumbnail/public/2021-09/Emili-Combest-Headshot.jpg?itok=dJa1dtzm)
![Randi-Gleason-Great-Strides-Walk-Featured-rectangle](/sites/default/files/styles/image_card/public/2021-09/Randi-Gleason-Great-Strides-Walk-Featured-rectangle.jpg?itok=WpW4SjZT)
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As I reflect on the 30th anniversary of Great Strides and my 35-year journey living with cystic fibrosis, I celebrate all the CF community has accomplished together and am thankful to be able to share my story as a 2018 National Ambassador.
![Randi-Gleason-Headshot](/sites/default/files/styles/author_thumbnail/public/2021-09/Randi-Gleason-Headshot.jpg?itok=ebXnXB-j)
![Bonnee-Binker-VLC-2018-Podium-Featured-Rectangle](/sites/default/files/styles/image_card/public/2021-09/Bonnee-Binker-VLC-2018-Podium-Featured-Rectangle.jpg?itok=br1uYRJ6)
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With another fantastic Volunteer Leadership Conference (VLC) in the books, I want to share some of the things we learned and how we can keep the momentum going through National Volunteer Week, and all year long.
![Bonnee-Binker-Headshot](/sites/default/files/styles/author_thumbnail/public/2021-09/Bonnee-Binker-Headshot.jpg?itok=J0hhcfwx)
![Paul-Motenko-And-Beatty-VLC-Featured-Rectangle](/sites/default/files/styles/image_card/public/2021-09/Paul-Motenko-And-Beatty-VLC-Featured-Rectangle.jpg?itok=dQFxNL1n)
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Caring for somebody with CF used to be a lonely journey. But that changed after I attended the first Volunteer Leadership Conference (VLC). I have attended the conference every year, and this year as a co-chair of the 15th VLC, I'm welcoming everybody to livestream it so we can share and learn together.
![Paul-Motenko-Headshot](/sites/default/files/styles/author_thumbnail/public/2021-09/Paul-Motenko-Headshot.jpg?itok=dFm83mIN)