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I was nervous about deciding to go to college — how would CF and the intensity of college fit together? There have been more than a few bumps along the way, but I’ve learned that through everything, I got this.
I initially struggled with how to share about my cystic fibrosis with people I met when I started college. Here’s what I learned.
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.
When I was in college, I wanted to do it all and my health wasn’t as much of a priority anymore. I learned to accept that things will not always go according to plan and to integrate routine in my life to ensure my health comes first.
When I went off to college it was up to me to manage my cystic fibrosis for the first time without help from my family. I felt fine after skipping my medications and decided to stop using my noisy vest because it embarrassed me, and I wanted to make friends at my new school. As a result, I stayed in the hospital for a few weeks and left with a new perspective on life.
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.
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.
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.