Dear friends and family, It's May 2020, which means it is another CF Awareness month and another time to talk about all the amazing things happening in the CF world! This has been a very good year in the CF community. In October of 2019, Trikafta was approved by the FDA for all people with CF with at least one copy of the dF508 mutation. 90% of people with CF have at least one copy of this specific mutation. This is a HUGE deal in the CF community because it is one of a handful of drugs that addresses the underlying cause of CF and the only drug that such a huge percentage of people with CF c ..read more

It's been a while since I've written. To be honest, I've missed it. Not for the likes or the comments, but because I do my best processing through writing. And, as we all know, there's a lot to process right now. I decided now would be a good time to jump back into writing while I have the time. It feels like the world is in chaos. Coronavirus has lots of people on edge. Many of us are quarantined to our houses. Scientists are telling us it's going to get worse before it gets better. I saw today that we might have to practice social distancing for a year or longer until there is a vaccine. A ..read more

Dear friends and family, I hope you all are having a happy and healthy 2019! The Great Strides CF Walk is just around the corner, and we are gearing up for a great walk day! Since my last CF Walk letter, my health has had its ups and downs. Just before the CF walk last year, I got the sickest I have been in awhile and had to fight off pneumonia with the help of 4 weeks of IVs. I also had to do IV antibiotics in August and November. However, I have stayed relatively healthy in 2019, and for that, I am extremely grateful! Although I’ve had to fight off 2 colds, my body has been able to get thro ..read more