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CF Letter 2020

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 can take. Trikafta is a total game-changer for so many, including me. I have gained stability, I require fewer IV antibiotics, I gained lung function I thought was long gone, and I feel like I can plan things in my life again. The hard work of the CF Foundation, willing researchers who continue to search for a cure and medicines that will increase quality of life, and the generous donations from so many of you have allowed for these life-changing drugs to be developed. However, Trikafta is not a cure, and around 10% of people with CF cannot take Trikafta. I still have to take around 30 pills a day. I continue to do 3 breathing treatments a day to help my lungs stay healthy. I have even had to do a few rounds of IV antibiotics when I can't fight infection without them. We are not finished working, and the CF Foundation has made very clear that they are not stopping until there is a cure for CF.

One of the harder things over the last year has been COVID-19. Like so many of you, people with CF are being asked to isolate. People with CF are particularly vulnerable because many people with CF already have significant lung function loss, so getting a respiratory disease like COVID-19 could be extremely dangerous. Many people with CF feel like the freedom given to them by Trikafta has now been taken away temporarily. We are used to needing to stay away from people who might be sick, wearing masks in cold and flu season to protect our lungs, and washing our hands and sanitizing our belongings. I am very thankful that the CF community has been vocal advocating for people with CF and working to protect us in this weird time.

Sixty-five years after the CF Foundation was founded, people with CF are living longer, fuller, healthier lives because of so many of your kind donations. If you would like to donate to the CF Foundation and continue funding the search for a cure, I would appreciate it so much! Every penny matters. You can also walk with us virtually on June 5 to raise awareness for cystic fibrosis! Thank you for your prayers and your support! It means more than you know.




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CF Letter 2019

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 through it without needing IV antibiotics. While I know I will need another round of IVs eventually, I am thoroughly enjoying being IV free. I credit this to the amazing CF therapies available to me, my compliance to my treatments, and all of your prayers for my health. I continue to take 30+ pills a day including enzymes to digest my food, vitamins and supplements that my body cannot absorb