
Hello family and friends,
For the last couple of years Taylor and I have not participated in Great Strides as the event has been virtual, and I we have felt uncomfortable asking people for money with so much COVID induced financial insecurity. But this year the walk is back in person, and we are back to raising money!
Most of you are probably aware of the incredible changes I have seen on Trikafta over the last 2 years. My lung functions have increased 17 percentage points, I have gained about 20 pounds, and I went for 8 hospitalizations the year before I started Trikafta to 0 since I started! It has given me a completely different life then I have ever had before.
But Trikafta is not a cure. I still face limitations due to damage. Despite being managed, I still have CF and it can still cause problems. I only have 50% lung functions, and difficulty gaining/maintaining weight. I don’t have a normal energy level, and still put a good bit of time every day into maintaining my health.
Additionally, Trikafta is not helpful for everyone. Trikafta only treats some mutations, there are many many other mutations that Trikafta doesn’t help. Some people do not see the level of improvement that I have seen on Trikafta, and still others cannot take it because of side effects, or allergies to the medication.
Without the CF foundation, and everyone who donates, Trikafta would not exist. The Foundation is still fighting to cure CF for everyone and develop better treatments for antibiotic resistant infections, repair lung damage, and treat many other complications of CF.
Trikafta is proof of the amazing improvements that are possible when dedicated researches get the funding that they need to make lives better. If you are able, please consider helping me to ensure that the research is well funded and can continue to push CF care into the future to save lives and improve the quality of life of everyone with CF.
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