Cystic Fibrosis is a genetic disease that affects the lungs and digestive system. It makes the mucus thick and causes infections in the lungs and difficulty in digesting food. Colt and Willow both have Cystic Fibrosis (CF) and having been working hard this last year to stay healthy.
Colt and Willow have been champs with COVID precautions, virutal school and less family and friend time than they would have liked. We will miss having Great Strides at the Zoo again this year. The Austin Cystic Fibrosis Foundation is having a Drive-Thru event for the CF Fighters in May. For our friends and family, we are having a Virutal 65 Roses Challenge over the summer! We hope you'll join us!
We are challanging you to do something related to the "65 Roses" theme! Some of you may have heard about why the Rose is a symbol for the fight against Cystic Fibrosis. One of the early fundraisers for Cystic Fibrosis Foundation was calling friends in the 60s asking for donations for her 3 sons with CF. The youngest son thought he heard her say "65 Roses." It is often hard for little children to pronounce Cystic Fibrosis, so this became an easy way for kids to say it. Ever since then, 65 Roses has becoming one of the CF symbols.
Colt and Willow will be working on riding their bikes 65 miles during the Summer! We challenge you to run 6.5 miles, walk 6500 steps a day, or bike 165 miles! The options are endless! We'll have some prizes for the most creative, fastest 6.5 km for kids and adults and maybe a couple more unique categories... Let's have some fun! Let us know your plans and when you achieve them. It could even be as simple as donating $65!
In the meantime, we'd love your support in funding more research for Cystic Fibrosis! We are hopeful that both kids will be able to take Trikafta, as soon as the FDA evaluates it for kids in June 2021! This drug will help correct the CF channel that doesn't fold correctly and make it work closer to normal. The next phase for improving the life of kids with CF will be correcting the channel completely, but that will require much more time and research.
So, since we are not having an in-person Great Strides walk, we challenge you to Lace Up and walk on your own or donate to the Aja's Amigos Team to help find a cure for CF!
Nicole, Dan, Colt and Willow