2012 Great Strides Totals / TOBI Update

Totals are in for 2012 fundraising...our walk raised $16,800 for a CURE for Cystic Fibrosis!!! WOOHOO!!! We've come a long way since our first walk where we raised like under $5,000 I think:) Each year we raise more and more for a CURE for Cystic Fibrosis and I can't THANK YOU ALL enough!!! It means soooo much to all us CF families!!!

Our A Cure 4 Lil' Chris team raised $6,967!! WOOHOO!!! That's awesome!! My calculations were over $7,000, but one of the Kohl's grants took longer than I thought and actually is on my new 2013 Great Strides Walk page:) That's ok, I'm starting off with a bang!! Although had I realized, I would've put in the extra $33 to put us at $7,000 ;-) LOL Oh well! Here is my link for 2013, who's gonna be my first sponsor? Remember, it's 100% tax deductible...

http://www.cff.org/Great_Strides/LilChrisChris6765

Yesterday we had a GREAT 1st meeting to kick off the new fundraising year and start getting ready for the walk this May 5th, 2013 at 11am!!! I'm really excited about this year, b/c we have 2 new committee members who are really motivated to not only have a great walk, but most importantly raise as much money as possible for a CURE for our little ones and all CFers. Big THANK YOU  to Samantha and Denna for being so passionate about a CURE and wanting to help in any way!! 

Samantha has a 9 month old CFer named Aubrey. She is the cutest lil' thing:) She was diagnosed at 3 months old. Her older sister, Makayla, went to preschool with Lil' Chris:) I wish they could hang out more often since we live so close, but it makes it hard having cfers in both families as we have to be careful of cross-contamination:(

Denna has a 9 year old son named Aden with CF and another son without CF named Alex. Aden was just diagnosed a little over a year ago. Denna has a great outlook on becoming a committee member, "It'll be good for not only myself but also Aden and Alex. Just for them to learn that no matter how small the contribution, every person can make a difference." Together, the 5 of us...Denna, Samantha, Alma, Kathy, and myself...can and will make a BIG difference!! :) Denna has already jumped in and has started getting things going for the walk and it's only been one day!! And Samantha has already gotten prizes for the walk and has done a few fundraisers already!! I'm soooo proud of these 2 ladies and proud to have them on our committee:) It's gonna be a GREAT Year!!

BIG THANK YOU TO NANCY, my sister D's mother-in-law, for doing a Yankee Candle fundraiser for CF and raising $267.60!!! WOW!!! That's AWESOME!! The cool thing is...I didn't even ask Nancy to do this, SHE came to me with the idea!! I LOVE her passion for a CURE for CF!!! Nancy has always been a BIG supporter of Lil' Chris and has donated each year and is always thinking of new ways to raise money for a CURE!! I can't THANK YOU enough, Nancy!! We love you!!

As for a CF update on Lil' Chris...his TOBI should be arriving today on our doorstep. This will be his 2nd time on TOBI and Cipro. We have had the Cipro for a few days now, but we had to wait until the TOBI got here to start it, b/c they have to be taken together. If he cultures Pseudomonas again after this next 28 days of treatment, then he will be on just TOBI, not Cipro and TOBI, every other month:'( Please pray this doesn't happen. If it does, then we'll take it one day at a time. 

WE NEED A CURE NOW!!!!!!! They are soooo close with the new drug Kalydeco combo. Lil' Chris just needs to stay as healthy as possible until it gets done Phase 3 and clinical trials, and gets approved by the FDA. Please pray this is a CURE or a better control of the lung issues associated with CF!

Thanks everyone,
M  
PS. Happy Birthday to a faithful blog reader, Kevin W.!!! Hope you have a great day!!! ;)