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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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A screenshot of a group Zoom meeting with Kristina Robinson and twelve other adults with CF


The Power of Meaningfully Connecting With Your Peers

Driven by a career in community health and a late cystic fibrosis diagnosis, I discovered my purpose through volunteering with the CF Foundation. Inspired by the power of connecting with my peers, I went on to develop my own program designed to support other adults in the CF community. 

| 4 min read
Elizabeth Raglow and a friend smiling at a Breathe Hope table on their college campus.


Realizing the Impact of My Volunteering

I began volunteering as a way to support my cousin with CF. But over time, I discovered the community and impact that can come from even the smallest efforts.

A professional headshot of Elizabeth Raglow
| 6 min read
An adult with CF reading a book while using her vest and nebulizer


Works by the CF Community: Summer 2023

We’re highlighting three creators who are helping raise cystic fibrosis awareness. They’re voicing the variety of ways that people experience the disease by sharing a part of their life through their works.

A professional headshot of Sarah Dobson
| 4 min read
Joey smiling with his dog.


How I Gained the Confidence to Share My CF Story

When the pandemic started, I started to feel lost and disconnected. That changed when I was introduced to a new program from the Cystic Fibrosis Foundation that taught me how to share my CF story with confidence. 

Joe Milteer
| 6 min read
Marian Schlosser Grandparents


What We’ve Learned From Our Grandchild With CF

Our hearts stopped when we first heard that our grandson, Jase, had cystic fibrosis. We didn't even know what it was. However, we have learned a lot along the way and have gotten used to rolling with the ups and downs of this disease.

Jamie Schlosser Headshot
| 5 min read


How Going on Disability Led Me to Join the CF Community

After I had to go on disability to focus on taking care of my health, I got involved with the CF community and volunteered with Community Voice. Little did I know it would help me when I needed it most.

| 5 min read


A Chance Meeting Led to My Involvement in the CF Community

Although I had heard of cystic fibrosis, I never knew anything about the disease until a chance meeting with a member of the CF community during a networking event. Since then, I have provided donations to CF events and am in awe of the determination and attitude that people with CF have about life.

| 5 min read


Advocating Alongside My Sister With CF

Since I could remember, my sister shared her CF story to raise awareness, and she inspired me to do the same. Now, with this year's Teen Advocacy Day, we finally get to advocate together.

| 4 min read


The Latest Books and Music From People With CF

Here's a snapshot of six works we're spotlighting from members of the CF community. Whether they shared their story through writing or through song, their work has been shaped by their experiences of living with CF.

| 8 min read


Finding Your CF Community

For a new parent of a child with cystic fibrosis, it can be an enormous help to speak to other parents in the same situation. The support and shared knowledge offered by another mother made a huge impact on me when my newborn son was diagnosed with CF.  

Amanda Walker Headshot
| 6 min read


CF Inspired Me to Pursue Pre-Med

Although I have no personal ties to people with cystic fibrosis, I developed my own connection to the disease -- first as a biology student understanding the science behind CF, and second as a member of the Tomorrow's Leaders College Program, where I learned about the people behind the statistics.

| 4 min read


Honoring My Partner’s Legacy

My partner, Jan, was a CF fighter for 50 years. She lived an amazing life and celebrated her lung transplant to the fullest. She passed away a few months ago and I'm honored to keep her fight against CF going strong.

| 6 min read