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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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.
Having a friend with cystic fibrosis has made me determined to do all that I can to help her fight for a cure. That includes leading the charge for making legacy donations to the Cystic Fibrosis Foundation.
My son, Arjun, has had the deck stacked against him in some ways. He was born early, with cystic fibrosis, and needed surgery. His resilience, and my hopes for his future, keep me inspired.
As I reflect on the 30th anniversary of Great Strides and my 35-year journey living with cystic fibrosis, I celebrate all the CF community has accomplished together and am thankful to be able to share my story as a 2018 National Ambassador.
With another fantastic Volunteer Leadership Conference (VLC) in the books, I want to share some of the things we learned and how we can keep the momentum going through National Volunteer Week, and all year long.
Caring for somebody with CF used to be a lonely journey. But that changed after I attended the first Volunteer Leadership Conference (VLC). I have attended the conference every year, and this year as a co-chair of the 15th VLC, I'm welcoming everybody to livestream it so we can share and learn together.