You've made it to Reid's Crew 2022!!! We are so excited to announce that the Great Strides walk will take place IN PERSON this year!! As much as I still love my couch and my sweatpants I am thrilled at the chance to walk with everyone and celebrate Reid's amazing health and our conitnued pursuit of a cure for cystic fibrosis!
Usually writing this update about Reid's health is difficult for me, I share the nitty gritty in hopes of conveying how brutal this disease can be and how hard Reid fights, all the stuff I usually don't want to think about. This year's update, however, is amazing and joyful and mind-blowing and brings tears to my eyes for different reasons. Reid started the triple combo modulator treatment called "Trikafta" when he turned 12 last July. This is the treatment we've been waiting for, fundraising for, and praying for since he was born. Reid took his first dose and within hours was coughing up gunk that had been trapped in his lungs. For the first time in his life his cough was productive and he was able to move mucus out. He was coughing and spitting and breathing deeply and laughing. I will never in my life forget the smile on his face when he told me, "Mom, I think it's working!" Reid has always been pretty stoic about everything having to do with CF, I wasn't expecting to see that kind of excitement in his eyes. I didn't realize that he was wishing for this just as hard as I was.
Since starting Trikafta:
- No respiratory exacerbations
- No antibiotic courses
- No doctor visits other than a standard check-in's
- No longer needs his 3X/week maintenance antibiotic
- Fully anticipate being able to drop other meds as more research is done.
- Grown taller and put on weight
- Participated in school and sports
- Lived a life not dominated by his disease
We share this victory with all of you who have supported us through the years, but we aren't done. There are still CF patients out there for which there are no modulator therapies. We are lucky in that Reid has one copy of the most common mutation, basically he has the common form of a rare disease. If he had two rare mutations we would be left still waiting for our turn. I feel as though my child's death sentence has been lifted - I have to keep going to make sure all CF patients and families get that same relief. Another fact still remains - Trikafta, while amazing, is not a cure. So we need to continue to support the CFF's efforts to solve the final piece of this puzzle. We are, as always, forever grateful for your help.
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