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.
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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.
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.
The Patient and Family Experience of Care Survey helps cystic fibrosis care teams start formal quality improvement projects, but it also has helped my team become more sensitive to the voices of our patients.
Program Aimed at Advancing Search for Therapies Targeting Most Common Mutation of CF
A lot of people with cystic fibrosis are turned off by the thought of counseling. Finding the right counselor can make all the difference.
Although I didn't have cystic fibrosis-related diabetes, I avoided dealing with my blood sugars. Now that I do, I feel stronger physically and emotionally.
Since starting the transplant journey, I have learned many things, run into many roadblocks, and been left shocked by other issues.