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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 black-and-white photo of Schyler standing in front of a mural of flowers


Finding Hope: Life Without CFTR Modulators

For those of us who can’t take modulators, it can sometimes feel like you’ve been left behind. But I have found hope and motivation by participating in clinical trials.

A selfie of Schyler Kline outdoors
| 5 min read
Steph Hansen smiling and walking down a cobblestone road


My Journey With Nonsense Mutations

Back in 2015, my genetic sequencing revealed one nonsense mutation. But recently, I learned I have another nonsense mutation that may not have been identified when my genes were first sequenced. As more mutation-dependent therapies are developed, it’s crucial that people with CF have accurate information so they can make informed decisions.

A professional headshot of Steph Hansen
| 6 min read
Selfie of Mel and his wife, Kate.


The Future of Clinical Trials in CF

While I’ve had the incredible opportunity to participate in clinical trials for cystic fibrosis, my nonsense mutations mean I can’t benefit from modulators. I was inspired by the North American Cystic Fibrosis Conference’s second plenary session, which discussed how we can evolve clinical trials to develop treatments for all people with CF.

Mel Kotlyar Headshot
| 5 min read


Despite COVID-19, I Participated in a CF Clinical Trial

I'm a big proponent of participating in clinical research, but COVID-19 made me think twice about participating in a clinical trial that required six hospital visits. However, a screening visit reassured me that the researchers were taking all the necessary precautions.

| 5 min read


Jumping Over My Fear to Join a CF Clinical Trial

I used to be afraid of the thought of participating in a clinical trial for a cystic fibrosis medication. But when my doctor asked me recently if I was interested, I jumped at the chance. My desire to help myself and the CF community finally outweighed my fears.

| 5 min read


Why I Took a RARE Opportunity to Help Myself and Others

Participating in the RARE study gave me an opportunity to play a role in finding a therapy that one day could help me and other people with CF who have two nonsense mutations.

| 7 min read