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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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Rena Barrow and her families, all wearing red t-shirts that read "Two Salty Okes" at their local Great Strides event

BLOG

Creating Change for BIPOC People With CF

My children’s experiences being African American with cystic fibrosis motivated me to speak out and ignite change for families who are Black, Indigenous, and people of color (BIPOC) in the CF community.

A headshot of Rena Barrow
| 7 min read
Bonnie Ellen smiling next to a horse.

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Bringing CF Awareness to the Hispanic Community

When my daughter was diagnosed with cystic fibrosis, I found it difficult to explain this disease to my parents in Spanish, and I also felt alone in my rural community. That is why I think it is important to bring CF awareness to the Hispanic community. 

Lili Hunt
| 4 min read
Joey Pelletier smiling with his cat.

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Becoming the Role Model I Wish I Had

I felt so alone as a kid being gay and having CF — there weren’t any role models in the 80s and 90s that I could look up to. Eventually, I found people who understood what I was going through and that helped me feel good about who I was, and who I am today.

Joey Pelletier
| 6 min read
Cambrey smiling with her husband and son.

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Struggling to Process My Son’s Rare Mutations

I struggled emotionally after learning that after negative carrier and newborn screens, my son had cystic fibrosis. I’m now advocating for people with rare mutations.

Cambrey White
| 6 min read
Lathronia and her son at a restaurant.

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My Advice to Other Parents of Color About Their Child With CF

My son, who is Black, has cystic fibrosis. It seems like just a normal fact of life, but I have become frustrated with having to convince doctors that he really does have CF. I hope that one day people of color won’t have to have the same experience.

Lathronia-Jefferson-Headshot
| 5 min read
Lauren-Washington-CF-Journey-Hat-Featured-Rectangle

BLOG

How Being a Black Woman Shaped My CF Journey

After years of being treated as an oddity, I want people to acknowledge that I am a Black girl with cystic fibrosis. I want my voice to be heard.

Lauren-Washington-Headshot
| 4 min read