Our 2015 CF Commercial that plays on MCTV

Saturday, April 13, 2013

My 1st CF Education Day!!

I just got back from my first CF Education Day at our CF Center. It was a lot of fun and they shared a lot of great info! It was so nice seeing and talking with other CF parents that I have met thru Facebook...Adam and Heather Longwell, Lisa Kibler, and now Loretta H:) 

There were also lots of vendors there giving away some great stuff!! I even got a pari cup(a nebulizer cup for TOBI)! Although I may not need it once they come out with the new Podhaler for TOBI this June!! WOOHOO!! This new TOBI will cut down treatment time by like 1,500 minutes a month!! That's AMAZING!!!!! I can't wait!!

I was so glad I got to go with Samantha, Aubrey's mom!! It's sooo nice to talk "in person"(not just fb;) about CF with someone who "gets it!" It makes me really want to start up CF Mom Meetings again;-) I used to set them up a long time ago, but then they turned into meetings about our walk. I think it would be nice for a few CF moms to get together and just talk CF once in awhile though:) I used to learn something new each time, and I always want to help anyone else out if I can.

They talked a lot about how the drug Kalydeco(which is basically a cure for those 4% of cfers who have G551D mutations) combined with the VX809 drug could be our possible cure for the majority of CFers within the next 10 years!!! ISN'T THAT AWESOME!!! Now we just gotta keep Lil' Chris as healthy as possible until then! They said that if the combo of those 2 drugs don't work out(they are currently in stage 3 clinical trials), then they already have some other drugs to try to combine with Kalydeco!!! That's great news too!

We are so close to a cure thanks to all your donations!!! Won't it make you feel soooo good to one day say..."I was a part of that cure:)" I don't know about you...but I can't wait til I can say those words!!! Cystic Fibrosis is the #1 genetic killer in children, and when we find a cure for it, it will be the only genetic disease that has a cure!!

If you would like to be a part of our cure for Cystic Fibrosis, click here to join my team to walk, or to sponsor me to walk for a cure on Sunday May 5th at 11am by Ida Sue School!!

 BIG THANK YOU to my cousin Charae & Paul, my Aunt Mar, my cousin Elizabeth, my neighbor Michelle P for spreading my blog on her fb wall and got a donation from her friend Jenn Conroy, and Barb N from Kohl's!!! I love that you guys will one day be able to say that you were a part of the CURE for Lil' Chris!!!! :) THANK YOU SOOOO MUCH FOR YOUR DONATIONS!!!! I finally got my cute thank you cards with Lil' Chris' pic on it and I will be mailing them out soon;-)
M
PS. I have lots of things to blog about, I just wish I had more time. The big news will be coming soon, I promise:)

No comments: