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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.

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Shellie, her husband, and her newborn baby smiling together immediately after her C-section

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Tips For Parents of a Child With CF

We couldn’t wait to take our daughter home from the hospital. But when the time finally came to bring my daughter home, I began to lose confidence in myself as I tried handling all the medications and formula. With time, I built a great routine for my family and learned some tips and tricks to share with other new parents.

A selfie of Shelby Dimel
| 6 min read
Cambrey White, her husband, and her son, Rowland, standing outside in a field.

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Coming Together to Advocate for Our Sons

Learning that my son, Rowland, has two rare cystic fibrosis variants and is currently unable to access highly effective modulator therapies was emotionally challenging and isolating for me. Then, I was introduced to another mom who could truly understand and relate to our experience. I am so grateful for not only the support we can provide to each other, but also for the friendship that grew from our connection.

Cambrey White
| 7 min read
Chris's son, Benny, sitting on a large ball in a birthday crown.

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Learning to Make CF Treatments Fun for My 4-Year-Old Son

When my wife and I learned that our son, Benny, has cystic fibrosis, we were concerned about how we would fit his treatments and care into our daily lives. We are grateful to have not needed to make many major changes like we anticipated, thanks to having a village around us and finding ways to make treatment time more fun.

Chris MacGuigan Headshot
| 5 min read
Molly Baker and her mother, Ann, sitting together at a formal dinner.

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A Tribute to My Mom’s Selfless Dedication

My mom was always my biggest advocate and most selfless caretaker, but she went above and beyond when she also took my friend under her wing.

Molly Baker headshot.
| 7 min read
Lousia wearing her vest and petting her dog.

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How I Felt Seeing My Daughter in Her Vest for the First Time

I was not emotionally prepared the first time I saw my daughter in her vest. But now, I am thankful to have this device as a part of our daily routine to keep her lungs healthy.

Jamie-Rudnycky-Headshot
| 3 min read
Kelsey Scott making silly faces with her son.

BLOG

9 Ways to Support a Family With a Child With CF

There are many ways you can support a family with a child or children with cystic fibrosis. Educating yourself about the disease and its treatments and offering to help without being asked are some of the best ways you can show you care.

Kelsey Scott Headshot
| 7 min read