|Great Strides Honolulu 2011|
next to Rachel's storyboard
It's December; I'm already beginning to prepare and fund raise for the Great Strides Walk 2012. Our walk is May 26th but starting early really helps. This year is a little more exciting for me. The big reason is because I recently found out that there are two drugs in the CFF's drug pipeline that are very promising and Rachel could benefit from them once available. These drugs are targeting specific mutations and they are designed to correct the function of the defective protein (Cystic Fibrosis Foundation).
THIS IS HUGE!
Rachel is doing well and I am grateful. However, CF is a nasty beast and in reality things can change so fast....even when you're doing everything right. Rachel, like most with CF, looks fine on the outside but CF can be very deceiving. Here's what you don't see - scarred lungs, abnormal pancreas, gut issues, liver disease (due to CF), etc.
In this 5 years of CF trying to take over, I've met some inspiring people and found some great resources that are helping us take down the beast. Two come to mind - #1 When we were stationed at Ft. Leavenworth, Rachel had clinic at Children's Mercy. I attended their CF Ed. Day and through guest speaker Dr. Foster Cline, I was introduced to the book "Parenting Children with Health Issues" (there is now a blog, too). I rave about this book any chance I get. This has been the best tool for dealing with touchy situations or behavioral issues. Applying the techniques from the book, nips potential disaster right it the bud. #2 Through random CF Google searches, I found the blog Run Sick Boy Run. The blogger, Ronnie, is an adult with CF. He is one of the most positive people (besides yours truly....hehe) that I've met or know. I was
sucked in drawn to his blog because of his positive attitude and outlook on life......it's very contagious. I find what he has to say very helpful to me. I love reading about CF from his perspective regarding pretty much anything, really. I think it helps keep me in check, too.
I don't really remember where I was going with all that, so.... anyway...............It's always a battle with CF. Yes, Rachel is doing well....but it's well - with CF...a deadly disease. Yes, we try to have a "normal" life, but hey, with CF sticking around that takes great effort. Sometimes, it's hard to stay positive, but we do or maybe I should say that we try.
Promising things are happening with CF right now. Unfortunately, many say good-bye each day.
Raising money to find a cure is high priority for me. I hope you'll support Rachel,our team Rachel's Rangers and the CF Foundation. I like to add that roughly 90 cents every dollar donated to the CF Foundation goes straight to research/education. I think that's amazing. If you can and/or plan on donating, you can click on Rachel's Rangers or the Great Strides tab on the right side of this blog. If for some reason neither work, you can go to http://www.cff.org/great_strides/ and search my name Sherry Meyer team Rachel's Rangers.
Thanks a bunch!
Thanks a bunch!