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CF Community Blog

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.

More community posts
Katie O'Grady running Boston Marathon

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After a Lung Infection and a Pandemic, I Finally Ran the Boston Marathon

I’ve been a runner for most of my life. After having to drop out of three previous marathons because of my CF, I was finally ready to run this year’s Boston Marathon.

Katie-O-Grady-Headshot
Katie O'Grady
| 6 min read
Lauren and her mom smiling

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Coping With Comparisons on Social Media When You Have CF

When I scroll through my social media accounts, it’s hard not to compare myself to other people and feel like I could have accomplished so much more had it not been for my cystic fibrosis. Instead of getting depressed, I now rely on therapy, positive affirmations, and being kind to myself to preserve my mental health

Lauren Vignola headshot
Lauren Vignola
| 5 min read
Xan Nowakowski Thumbs Up Watching NACFC

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Expanding Treatment Options for Everyone Who Has CF

I was pleased to see that the third plenary session at the North American Cystic Fibrosis Conference included patient stories that reflected the diverse experiences of those with cystic fibrosis. I also like that it focused on the need for bold action to help those who can't benefit from modulators and centered on the full ecology of treatment innovations that can benefit every person with CF.

Xan Nowakowski Headshot
Alexandra “Xan” Nowakowski
| 7 min read
Art Brace and Carmen in Italy

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Expanding the Scientific Frontier to the Next Generation of Therapies

After watching the second plenary of the 2021 North American Cystic Fibrosis Conference, I was incredibly impressed by the level of support the Cystic Fibrosis Foundation is providing to the development of the next generation of therapeutics. Developing genetic therapies -- especially those as complex as gene editing -- will take a long time and a lot of collaboration.

Art Brace Headshot
Art Brace
| 7 min read
Jennifer Gell Family Watching NACFC Online

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How CF Care Adapted to Meet the Challenges Posed by COVID-19

The COVID-19 pandemic brought great challenges to cystic fibrosis care. As Michelle Prickett showed during plenary 1 of this year's North American Cystic Fibrosis Conference, CF care teams adapted to provide care and keep us safe. It also shows where CF care may be headed in the future.

Jennifer Gell Headshot
Jennifer Gell
| 6 min read
Stacy Allen Evan Doctor Selfie

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Feedback to My Son’s CF Care Team: Together, We Make It Better

As Evan's mom, I have to constantly decide where to invest my time, especially when it comes to providing feedback. So, when offered the chance to turn my survey fatigue into something that would actually make a difference and be less of a hassle to do, I jumped at it.

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Stacy Allen
| 5 min read