Earlier this month, we learned that the new CF drug Orkambi was approved by the FDA. This was such an exciting, memorable and emotional day for everyone in the CF community. We heard from many who were thrilled about the potential for this drug to help people with CF and also heard from those who would not benefit from this breakthrough. Following are some reactions from those this impacts the most: people with CF and their loved ones.
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I can say without hesitation that the cystic fibrosis online community is unlike any I've ever seen. In my new role, I am excited to see the very engaged CF community in action. I can't wait to communicate with everyone, especially those in the online community, and see where you'll take us next.
The radio stations are filled with holiday music, but as 2015 comes to a close, I find myself listening to an entirely different playlist. In my mind, there are not only songs that make me reflect on the path that my family has so carefully traveled so far, but also the hope and the promise of all the good things yet to come.
An inside look at the inspiration and purpose behind our new CF Community Blog.
Our top blog posts of 2015 focus on big decisions, difficult struggles and small battles against CF.
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.