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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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Ruby Steuart selfie with a mask.


What the Promise of Genetic Therapies Means to Me

I felt unrelenting hope watching the first plenary of this year’s North American Cystic Fibrosis Conference. As I learned about progress that has been made in sickle cell disease, and how those learnings may help us develop a genetic therapy for CF, it showed me that the CF community is supporting people like me who can’t take modulators.

A light-skinned woman with light-colored hair
| 3 min read


| 9 min read


We Need Better Treatments for Infections

Everyone with cystic fibrosis faces the fear that their next infection could be the one that doesn't respond to treatments. Chronic infections eventually led to my sister's death. After seeing what she went through, it became clear to me that we have an immediate need for better anti-infectives.

| 4 min read


Patient Safety Is a Top Priority in Clinical Research

The top priority in clinical research is protecting the safety of people who participate. Learn more about the numerous layers of review that help keep participants safe.

| 1 min read


Scientists Explore Potential and Challenges of New Technologies at Savannah Research Conference

For the first time, the Cystic Fibrosis Foundation invited non-CF experts to its annual research conference to meet with CF researchers. The conference -- New Technologies Advancing Toward a One-Time Cure -- in Savannah last month focused on the challenges being faced in gene editing, gene delivery and stem-cell biology and laid the foundation for new collaborations.

| 4 min read


I Better Start Saving for 100 Days in Hawaii

When my 8-year-old daughter with CF found out that the disease is potentially fatal, I was grateful for her optimistic views on life and death. But deep down, I was saddened with the thought of a cure being so far away that I wouldn't be around to see it. Today, my fears have dwindled. 

| 3 min read