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.
Site Search
For a new parent of a child with cystic fibrosis, it can be an enormous help to speak to other parents in the same situation. The support and shared knowledge offered by another mother made a huge impact on me when my newborn son was diagnosed with CF.
Although I have no personal ties to people with cystic fibrosis, I developed my own connection to the disease -- first as a biology student understanding the science behind CF, and second as a member of the Tomorrow's Leaders College Program, where I learned about the people behind the statistics.
Since I could remember, my sister shared her CF story to raise awareness, and she inspired me to do the same. Now, with this year's Teen Advocacy Day, we finally get to advocate together.
Although I had heard of cystic fibrosis, I never knew anything about the disease until a chance meeting with a member of the CF community during a networking event. Since then, I have provided donations to CF events and am in awe of the determination and attitude that people with CF have about life.
At ResearchCon 2020, President and CEO Dr. Mike Boyle answered some of the community's top questions on COVID-19. Here's your guide to hearing the answers to your questions.
For those who haven't experienced it, the Cystic Fibrosis Foundation's annual Volunteer Leadership Conference is a magical time when everyone can get together and share moments of hardship and triumph in the fight against cystic fibrosis.
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.
CF Foundation Public Policy interns Shannon, Oakey and Erin share highlights from attending Teen Advocacy Day 2015, where 62 teens from across the country traveled to Washington, D.C., to meet with their Representatives and advocate on behalf of their siblings, friends and relatives with CF.
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.