Our 2015 CF Commercial that plays on MCTV

Sunday, April 28, 2013

1 Week til our CF Walk!!!

1 week from today is our big CF walk!!! I can't wait!! If you would like to walk, you can register by clicking here and click "join my team" or you can sponsor us by clicking "click to donate."

BIG THANK YOU to Chantel, Todd, Josh, and Mia for your generous donation!! Wish you guys could be here to walk with us!!!

Another BIG THANK YOU to Mr. Claes, the Administrator at Lil' Chris' School, for signing up to walk with us and has already raised money!! Mr. Claes has also been putting my blog in the school newsletter to all the parents to help raise awareness about our walk and about Csytic Fibrosis. THANK YOU MR. CLAES for being such a GREAT supporter of Lil' Chris!!!

BIG THANK YOU  to Sean and Michelle, our neighbors, for walking with us and has been diligently gathering donations and posting my blog link on their fb to spread awareness!! You guys ROCK!!! 

I've had more hits on my blog more than ever thanks to everyone who has been sharing it!!! AWARENESS IS KEY TO A CURE!!!! Awareness brings donations, donations bring a CURE!!!

Plans for the walk are all coming together nicely!! BIG THANK YOU TO DOMINOS, PANERA BREAD, and McDONALDS for donating the food!!! We wouldn't have a walk if it weren't for you guys!!

Everyone has been telling me that they have been seeing my commercial for the walk!! That's BIG THANKS  to MCTV for donating all that air time for us!! THANKS MCTV!!!

Thanks, and I'll see ya in one week:)
M

Saturday, April 20, 2013

Best Teacher / CF Walk Update / Thank You!!

HAPPY BIRTHDAY MRS. FALKENBERG!!!
It was a privilege to be a part of Lil' Chris' teachers birthday! 
She is such a wonderful woman! She gets the Teacher of the Year Award from me;) She really loves and cares for Lil' Chris:) She made a collection jar for CF and has been talking it up all year to collect change for CF! The jar is getting very heavy;)
She also has been talking up our CF walk coming up in just 2 weeks! We now have 7 families coming from the Wooster Christian School just to support Lil' Chris!!  
That's AWESOME!!! 
This is going to be our biggest and best walk yet!! Normally we have about 75 total walkers with all teams combined...this year I have about 80 just for A Cure 4 Lil' Chris team!!! That's def a GREAT feeling to have all the wonderful support!! :) I think I might have to get with Domino's about ordering more pizza's! I'm praying that they will still donate all of them:)
We have doubled our teams too! In the past we had 3 teams at our walk, Lil' Chris, Daniel, and Jack. Now we have 3 more teams! Aden, Aubrey, and Sophia!   
I'm sure we all have mixed feelings about having more teams...on one hand we love it that our walk is getting bigger and bigger, but on the other hand...that means more kids were diagnosed with this horrible disease known as Cystic Fibrosis:(
But I'm very glad to see that these wonderful CF parents are taking an active interest in their child's health by getting out there and raising money and awareness for a CURE!!! 

TOGETHER, WE WILL MAKE CF STAND FOR CURE FOUND!!!  

Thank you everyone who has signed up to walk and/or donated!! We can't thank you all enough!! 
If you haven't donated yet and would like to, just click the Great Strides Logo in the upper right hand of this blog and then "click to donate" or click "join my team" to register to be a walker:) Let me know if you have any questions!

HUGE THANK YOU to Carrie G and Stephanie W for doing the Thirty-One and Arbonne CF Fundraisers!! We raised a total of $1,350!!!! WOOHOO!! THANK YOU TO EVERYONE WHO BOUGHT SOMETHING FROM THESE 2 FUNDRAISERS:) WE GREATLY APPRECIATE IT!! AND THANK YOU CARRIE AND STEPHANIE FOR DONATING YOUR COMMISSION!! YOU GIRLS ROCK!! BIG THANK YOU TO MY KOHL'S TEAM FOR HELPING OUT AND GETTING US THE $1,000 GRANT!!
 If anybody wants to do a Thirty-One party or Arbonne party, let me know and I will hook you up with these amazing girls:)

BIG THANK YOU to Verizon on Milltown for sponsoring us!! You guys are AWESOME!! Look forward to seeing you at the walk!! :)

Thanks, 
M
PS. I have about 5 other posts all started, but not finished yet...big news coming soon...and more than just one;o

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:)

Saturday, April 6, 2013

Big Thank You / New Treatment Coming / Update

BIG THANK YOU to....
My mom
Uncle Joe & Aunt Diana
Aunt Donna
Al S.
Audra & Jon

Thank You Guys So Much for your generous donations to A CURE for Lil' Chris and ALL who suffer daily from Cystic Fibrosis!!! We ALL appreciate it sooooooo much!!!

For those who would still like to donate, it's not too late, just click here. Remember, it's tax deductible!! :) I can't believe our walk in less than a month away!!!

They are getting soooo close to a CURE! Better meds keep coming, which is FANTASTIC!!! 
Here is a New Treatment Option for CF Patients coming soon...

FDA approves Novartis TOBI® Podhaler™for certain cystic fibrosis patients,
the first and only dry powder inhaled antibacterial in US!!

TOBI Podhaler is portable and requires no nebulizer, refrigeration or power source to deliver the medicine

TOBI Podhaler is indicated for certain cystic fibrosis (CF) patients with Pa and shortens treatment time by about 70% compared to nebulized TOBI®
Novartis announced on March 22, 2013 that the US Food and Drug Administration (FDA) has approved TOBI® Podhaler™ (tobramycin inhalation powder) 28 mg per capsule for the management of cystic fibrosis (CF) patients with Pseudomonas aeruginosa (Pa) bacteria in the lungs. Pa is the leading cause of loss of lung function in CF patients. TOBI Podhaler is anticipated to be available in the US in the second quarter of 2013.

For more information, please visit: http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm345123.htm

This will be soooo GREAT for Lil' Chris if he can take it!! It will cut treatment time for TOBI from 25 min to a few min. in the morning and evening each!! WOW!!!!

As for an update on Lil' Chris, he is still doing VERY well!! No cough, no cold, no nothing!! We are so blessed to have to have so many people praying for him daily! We can't thank you all enough for all that you do for him!!
M
PS. BIG news coming soon ;)