Today is a truly huge day for the CF community, as the FDA announced that it has approved the new Vertex triple-drug combination, Trikafta, that will treat the underlying cause of CF in 90% of patients with the disease, including Lemon! The approval is just for people ages 12 and up right now, but we hope that the approval for the 6-12 age group won't be too long in coming. This is the medicine that we have been hoping for since the day Lemon was diagnosed, and the fact that it is here is just incredible. We cannot wait to see what this medicine will do for Lemon, and all the possibilities that it will open up for him. Thank you to everyone who has been with us on this journey, this is your victory as well as ours.You can read more of the details in Vertex's press release, which can be found here.
We had the honor this weekend of meeting Gunnar Esiason, an adult with CF who is a well-known voice in the CF community, and is the son of Boomer Esiason of football fame. He was the keynote speaker at our clinic's annual Family Education Day, which was Saturday. It was, as always, a good chance to get an update on what's new at our clinic, in the research world, and most importantly to connect with other people in the community that we see far too infrequently. We all share the same struggles, and it's so important to all of us to talk to our fellow travelers from time to time.
In CF news that is closer to home, we decided to go ahead and do a round of Cayston. That cough never really quit, and Lemon definitely seemed more and more exhausted and not himself. I think it was the right decision, he seems to have perked up considerably and the cough is gradually fading. With any luck we'll be able to just do 10 days worth and then put this episode behind us. Winter is coming, after all, and we need to go into it as healthy as possible. Speaking of, did you all get your flu shot yet?
