Although I'm glad that my two children with cystic fibrosis will soon have the opportunity to try Trikafta, I am also a little worried about whether they will have side effects and how well they will do on the drug long-term.
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My feisty, athletic nature has gotten me through two double-lung transplants. Although my active lifestyle is different than before, I have embraced brand-new competitive pursuits that have helped me develop the mental fortitude to overcome medical adversity.
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.
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.
It took me 38 years to find a fitness program to stick to. And since I started TrikaftaTM, I am even running for the first time in my life -- and almost enjoying it!
Growing up with cystic fibrosis made me feel different and like I had a lot to overcome. The road that led me to my own personal training business showed me that CF has shaped me in good ways.
Running amidst the beauty of the Kansas countryside helps improve my lung function and mood and has even kindled a passion inside me for the environment.
After fighting an awful infection, I had written off my dreams as 'impossible.' But after encouragement from my family and plenty of training, I made it my mission to not let CF stand in my way.