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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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Katrina-Young-Sean-Beach-Closeup

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The Heart of Science

The radio stations are filled with holiday music, but as 2015 comes to a close, I find myself listening to an entirely different playlist. In my mind, there are not only songs that make me reflect on the path that my family has so carefully traveled so far, but also the hope and the promise of all the good things yet to come.

Katrina-Young-headshot
| 4 min read
Mara-Cray-DC-Panel-Speaking

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Mara Goes to Washington

Last week I travelled to D.C. to serve on a panel discussing the recent developments in precision medicine. I've got to say, it was pretty neat.

Mara-Cray
| 3 min read
Rachel-Koren-Briefing-Panelists

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NIH Research Forms Basis for Advances in CF Treatment

As Congress weighs budget appropriations, we look at long-term funding for the National Institutes of Health. We decided to sit down with the Foundation's senior vice president of research affairs to learn more about why the work being done at NIH is so important in the search for a cure for CF and other serious, rare diseases. 

Rachel Koren Headshot
| 5 min read
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How an Experimental Drug Becomes an Approved Therapy

Ever wondered what it takes for a potential cystic fibrosis drug to become approved by the U.S. Food and Drug Administration? Here's an explanation of the four phases of clinical research.

Christina-Roman
| 2 min read
Christina-Roman-Bogart-Crowd

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Opening Doors to CF Clinical Research

There have never been as many new CF drugs in development as there are today. In the second plenary at NACFC, Dr. George Retsch-Bogart outlined the progress we've made, the road ahead and the changes needed to make it all possible. Read on for my key takeaways.

Christina-Roman
| 3 min read
Rebecca-Schroeder-Advocacy

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Paddling Hard in the Right Direction

When Brady was diagnosed with CF, I felt like I'd been thrown into a river without a paddle. But then I realized my “paddle” was CF advocacy, and it could help steer our boat in the right direction.

Rebecca-Schroeder-Headshot
| 5 min read