2015 Walk Update

I can't believe it's that time of year again!! I've been busy planning our 6th Annual Great Strides Walk for a CURE for Cystic Fibrosis in Wooster!! It will be on Sunday, May 3rd at the pavilion by Ida Sue School. Registration begins at 11am and the walk begins at noon. Hope you can join us!!

So far, I have most of the food and entertainment nailed down...
-Panera Bread Bagels
-Domino's Pizza
-Buehler's fruit
-Ice from Speedway
-Pat Catan's craft table
-Dr. Dave the Science Guy doing balloon animals
-The Cat's Meow character will be there again from 1-2p
-Wooster Fire Truck will be there from 11-12:30
-Samaritan Care Ambulance will be there from 11-2:30

I'm working on getting prizes for the walkers, so if anyone wants to help, that would be AMAZING!!! BIG THANK YOU to Debbie C. for offering to help gather some prizes this year!!! THANK YOU DEBBIE!!!!! YOU'RE THE BEST!!!!

Also, I'm working on trying to get sponsors, either individual single rose sponsors of $125, or corporate sponsors(ranges from $125-$10,000). If you know of a business that does this, please let me know and I will contact them. Their business will be represented at the walk on a big sign!

If anyone has any other great ideas for us to add to our walk this year, please let me know! I'm always trying to think of new creative things to make it more fun for everyone!! :)

Don't forget to register to walk so I know how much food to get!! It's quick and easy to register and saves time the day of the walk! Here is the link to register for our 2015 walk, just click on the team that you want to register under(my team is A Cure 4 Lil' Chris) or click Join A Team... http://fightcf.cff.org/site/TR/GreatStrides/104_Northern_Ohio_Cleveland?fr_id=3488&pg=entry

Our walk so far has raised $5,630 and the goal is $35,000, so please register and start fundraising today!!! Ask 10 friends and family for a $10 donation, and you will get a FREE Great Strides T-shirt at the walk for raising $100!! :)

We are so close to a CURE and the only way we will get there is by raising the MUCH NEEDED money to help in the research!! Please, join us or donate!!! Get creative in your fundraising! My kids classes are going to do "Change for CF" where they bring in loose change for a month! :)

We are working on getting the commercial for the walk done. BIG THANKS TO MCTV FOR ALWAYS BEING SO KIND TO PLAY IT THE MONTH BEFORE OUR WALK IN ANY OPEN SPOT THEY HAVE!!! THEY ARE THE BEST!!!! :) I'll post it when it's all done.

Thanks, I'll keep you updated!!

M

New Enzymes 1/29/15

Sorry it's been so long since my last post, but....NO NEWS IS GOOD NEWS, right??? :)

One of my last posts said that Chris hadn't gained any weight, well...at his next clinic apt, he ended up gaining like 2 or 3 pounds!! We were soooooo thrilled!!! Since then, he hasn't gained as much, but little bits each apt, so there was no increase in enzymes. However, his cf dr told us to use up what enzymes he had, then she would prescribe a stronger one. I guess she could see what was to come. He has been taking about 7-8 of the blue and red pill above with every meal and snack. He actually swallows them all at once too!! Not bad for a 7 year old, right??

A sign that his enzymes aren't working are poor weight gain and/or greasy/oily stool. For those who don't know...those with Cystic Fibrosis need to take special Enzymes(pills above) with everything they eat, b/c their body doesn't digest the food properly. Therefore, if they didn't take the enzymes, the food would basically just run right through them and their health would decline very fast. Good weight gain helps the lungs too, which is another big factor when it comes to Cystic Fibrosis. So his CF dr keeps a close eye on how well his enzymes are working.

At one of his cf apts, the dr prescribed a stronger enzyme(the red and clear one above). It's a lot bigger than his old ones, which he has used from birth. He started taking them on 1/29/15, his sister Ayla's 6th birthday:) He was getting REALLY greasy/oily stools and he was at his max amount that he could take with his old pills, you can only take 8. Therefore, we started him on the new bigger ones. He made the decision himself! He wasn't too sure about taking the bigger pills, so I wanted him to decide. After about the 3rd or 4th bad greasy/oily stool in just a few days, he said to me, "Mom, I think I need to start the new pills now." I asked him if he thought they would help, and he said yes. So, he started the new bigger ones, and has not had a greasy/oily stool since!! I'm so happy he sees what the pills can and can't do now! I'm trying to build the foundation for his future. I've seen a lot of CF kids refuse to take enzymes once they hit a certain age, b/c they may be embarrassed or something. Well, now he kinda sees what will happen if he doesn't take them. Actually it would be a lot worse if he doesn't take anything at all, but.....we will cross that bridge when/if we ever get there.

So, he swallows 2 at the same time of the bigger enzymes with every meal and snack now!! He does it like it's nothing!! I'm so proud of him! He's my champ:)

As for a general CF update, he has been culturing something the last few times, but nothing to worry about at this time. He had two 24 hour bugs this winter, but no coughs or bad colds or anything. I don't think he was on any antibiotics this past year!! That's amazing for a CFer!! The Pulmozyme really does help him!! Now they are coming out with a new way of administering Pulmozyme! It will only take 2-3 minutes, rather than 10 minutes!! Plus, it's an on-the-go type, so he won't have to be sitting next to his nebulizer machine!! YEA!!!

Overall, he has been doing GREAT!!! We all had a BLAST on his Make A Wish trip to Disney Land this past July!! We are so grateful to the Make A Wish Foundation!! See my last post of all the pics we took:) I plan on giving back someday...maybe be a volunteer:)

I'll try to update more if I can. It's been hard since I got promoted at work. I used to work 36 hours, now I work around 50 hours a week. Plus, I have already started planning for this years Great Strides Walk for CF!! Save the date, it's on Sunday May 3rd 2015!!! Can't wait!!!

Have a GREAT day!!
M

Photo Book

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Garage Sale/CF Bake Sale Results

THANK YOU EVERYONE who bought something at our garage sale and the CF Bake Sales a week ago!! We raised about $400 for a CURE for CYSTIC FIBROSIS!!! WOOHOO!!!

 

BIG THANK YOU TO OUR AWESOME NEIGHBORS for doing the CF Bake Sale to help raise money for CF!!! You guys are always such big supporters!! We can't thank you all enough!!!

 

I also got some Loyal Customers and 10 leads for my new It Works company!! A portion of all of my It Works sales goes towards a CURE for CF too!! If you want to try those crazy wrap things, let me know!! We have lots of other all natural products too!! My website is www.wraps4cf.com and we are not limited to just the US:) If you have any questions, you can email me through my website at the bottom:) So thankful for this company since my husband lost his job! I esp love that it's all natural products and that it is a Christian based company:)

 

Thanks again everyone!!

M

5th Annual CF Walk Results

WOW, I have so many people to thank, I don't know where to begin...;)

First off, BIG THANK YOU to all who walked with us and helped get donations for A Cure 4 Lil' Chris and all who suffer from Cystic Fibrosis!!! So many of you have brought tears to my eyes with your dedication to raising the much needed money for a CURE and longer life for my son. So many of your friends and family have so generously donated even though they don't know us. I will be forever grateful to YOU and THEM!!! Every penny gets us closer and closer to a CURE!!

THANK YOU...
David and Debbie C. (raised over $1,000!! AWESOME JOB, the most EVER from a team walker!!:)
Kevin and Jessie W.
Deb and Mike W.
Stacy W.
Kristin K.
Ashleigh and Cody S.
Andrea and John S.
Lynnette and Jillian C.
Miller Family
Gail R.
Butler Family
Spencer H.
Josh W.
Cody S.
Robbie and Jamie
Rosie C. and family
Morgan, Ella, and family


BIG THANK YOU to those who have donated towards my team, A Cure 4 Lil' Chris!! I know most of you live very far away and can't make it to our walk, but I'm so grateful for your support and generous donations to help end Cystic Fibrosis!!
THANK YOU...
Barb N. (Thanks for my first ever reoccurring monthly donation!!:)
Steve, Danielle, Cara, Eva, and Rafe S.
Al and Nancy S.
Aunt Mar
Centeno Family
Dad
Aunt Donna and Uncle Jerry
David and Elizabeth Harcus
Mom
Paul and Kim S.(made my birthday with their donation:)
Rachel P.
Stacy W.
Carol S.
Holly S. (Thanks for doing your party to raise money for CF!!)
Tiffany L.

BIG THANK YOU to the business sponsors I got this year! We are soooo grateful that your business would help support our great cause!!
THANK YOU...
Kohl's ($5,000)
Sprint Preferred Wireless($500)
Anonymous Sponsor($250)
Verizon on Cleveland Rd($125)
Wayne Savings Bank($125)
The Borelli Agency
Alice Noble Ice Arena
MCTV
Sign Design Wooster
Dominos
McDonald's
Panera Bread
Jimmy John's
Woo's Brew
Speedway for ice
Everyone who made cookies
Pat Catan's
Wooster Fire Dept
Samaritan Care
The Cat's Meow
Dr. Dave

I gotta thank my AMAZING team at Kohl's for doing all my CF fundraisers throughout the year and for coming to our walk! I can't thank you guys enough for all the support and for helping us raise $5,000!!
THANK YOU...
New Philly Kohl's for driving all the way to Wooster to our walk:)
Scott
Dorrice
Ramona
Sarah
Rachel P
Devin
Jolleen
Laura
Claire
Jen M
Jen E
Stacie M
and I'm sure many more that helped out at one point or another with my fundraisers:)

 

I'd like to thank our AWESOME Wooster Christian School Team that walked with us too...
THANK YOU...
Mr. Claes
Mrs. Falkenberg and family
Mrs. Curtis and family
Jillian and family
Tripp and family
Alexis and family

BIG THANK YOU to Mrs. Falkenberg(Ayla's teacher) and Mrs. Buehler(Lil' Chris' teacher) for collecting change for CF over the past few months in the classrooms!! And BIG THANK YOU to all the kids who brought their change in to help support a cure for Lil' Chris!! We are very thankful to you all!! Wooster Christian School is the BEST!!!!

Our whole walk was a HUGE success and so much fun!! We had about 200 walkers!! WOOHOO!!We had 8 different teams!!  All together, the teams brought in about $5,000 to the walk!! Together with what was raised online with all the teams, and what was brought in, and what will be coming in soon, it totals to about $28,409!!!! That's AWESOME!!! The most our walk has EVER done!! BIG THANK YOU to all the teams for raising so much!!

Our A Cure 4 Lil' Chris team brought in $10,195 so far!!! OUTSTANDING!!! THANK YOU ALL!!! We will still be collecting donations until Sept, so hopefully we can do some more fundraisers and hit $30,000!! THANK YOU EVERYONE SOOOOO MUCH!!! I'm sorry if I didn't get to talk to everyone at the walk...as you could see, it's kind of a crazy day for me making sure everything runs smoothly;) Our CF Northern Ohio Chapter, which is a total of 7 different walks, raised a total of $652,108!!! I smell a cure coming!!:)
 BIG THANKS to the Lord for the beautiful weather and no rain!! Thank You for answering our prayers, b/c it was supposed to rain that day.

We are having a big community garage sale this Sat from 8am-4pm and everything sold from our house will go towards a CURE for CF!! The other houses in our neighborhood are selling baked good for CF!! We just love our neighbors:) They have always been such big supporters of Lil' Chris!!

 

 

I started a new business called It Works! They are those crazy skinny wraps that everyone is talking about that work in just 45 minutes:) I tried them, and they ACTUALLY DO WORK!! So, I decided to spread the word about them to help out other people. I will be selling them at my garage sale too, and a percentage will go towards a cure for Cystic Fibrosis!! I originally started this company with intent to have all my commission go towards CF, but then my husband ended up losing his job 10 days later, so not all will go towards CF, but most of it will:) Come see me if you want to try one!! Message or email me for address lilcmom@gmail or you can order straight from my website www.wraps4cf.com. I've been doing pretty well, b/c the results sell the products, not me:) If you'd like to join my team and be debt free, let me know. It's only $99 to join and you get a box of wraps that you can sell for $100...so you earn your money right back!! Now is the time to join, b/c this company is skyrocketing, esp with Summer approaching:)

I'm sure I forgot about someone to thank, but please know that we GREATLY APPRECIATE EVERYONE and EVERY PENNY RAISED!!!!

We hope to see everyone again at our walk next year!!!
M
PS. Lil' Chris didn't have the best last CF clinic apt. He didn't gain any weight, CFers need to eat lots of calories to stay healthy. He has his annual CF clinic apt this coming Wed, so I will let you know how it goes. Pray for great results all around, b/c our Make A Wish trip is coming up soon!!! YEA!!

What to Expect at our CF Walk

I'm soooo excited for our big Cystic Fibrosis Walk tomorrow!!! I've got everything all packed and ready to go!! Here is a pic of most of the prizes that we will be giving away to our walkers...

Lil' Chris wanted to get in the pic:) LOL

He had his first baseball game today!! He hit the ball 3 times!! Go Chris!!! Here he was all ready to go!! :)

 

So I thought I would go over what to expect at the walk tomorrow for those who have never attended before(CF parents, please share/tag this with your teammates)...

-Nate from the CF Foundation will be there in the beginning helping us get set up, then he will have to leave to go to another walk. Say Thank You to him if you get a chance:)
-Try to get there at 11am, because that's when most of our entertainment will be arriving. The kids can explore the Fire truck, the Ambulance, make a craft at the Pat Catan table, get a balloon animal made, meet Casper the Cat(if weather is good), and get their hair sprayed with some color:) The gold glitter one is for our CFers only, so we can tell them apart. CFers can't be near each other because of the risk of cross-contamination, so they will have to take turns at each station and sanitize thoroughly afterwards. We will need everyone's help keeping them separated.

-As soon as you get there, go to the registration table to check-in and to make your donation or to turn in any money that you have raised. Be sure to put each walkers name on their own raffle ticket for a chance to win a prize!!! They will give you a ticket to get your free CF Shirt if you raised over $100!! Then go to the shirt table to pick it up!
-Next, check-in with your team leader and go explore the entertainment and have fun!! Don't forget to grab a bagel or fruit and some coffee courtesy of Panera Bread and Woo's Brew's!!
-At 11:45 I suggest all the teams go to their team leader to take a team picture:)
-At 11:50 I will start the announcements. I will announce the sponsors and we may do a group picture if we can. Then the walk will begin at noon.
-At noon you walk 2 laps around and then head back to the pavilion for some pizza, chips, snacks, cookies, and water/soda/juice. Bathrooms will be open by the soccer fields.
-When your done eating, check the prize table to see if you won anything! :)
-Then you can check out the entertainment one last time before they leave. Be sure to thank them for donating their time to be with us!! :)
-I will not make any other announcements, so you will be free to go whenever you like:)

I still need some volunteers for the following, so let me know...
-someone to come early at like 10:30 to put the arrow signs up around the walking path
-be in charge of the food and drinks(keeping it full and handing out the pizza)
-do the color hair spray
-someone to make sure the entertainment gets food and drink(I always forget:)
-someone to take pictures

THANK YOU TO ALL WHO ARE ATTENDING OUR WALK FOR A CURE FOR CYSTIC FIBROSIS!!! TOGETHER, WE WILL MAKE CF STAND FOR CURE FOUND!!!

See me or your team leader if you have any questions. Thanks again for all the money you have raised!! See you tomorrow at 11am at Ida Sue School pavilion 266 Oldman Rd, Wooster!!!

If you can't make the walk but would like to still make a donation, click here to donate to your team!!
M

Update on our Walk / Cat's Meow

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Back

Guess what??? Casper the Cat from The Cat's Meow will be at our walk this Sunday if the weather is good!! YEA!! The Cat's Meow is also selling a special CF product in their store this WHOLE YEAR where a percentage of each of it's sales will go towards a CURE for Cystic Fibrosis!!! Isn't that AWESOME!! Every CF home needs one of these! Click here to order one today... https://www.catsmeow.com/

The walk is this Sunday at 11am at the pavilion by Ida Sue School and it's not too late to register to walk or to donate!! Click here... http://fightcf.cff.org/site/TR/GreatStrides/104_Northern_Ohio_Cleveland?px=1442439&pg=personal&fr_id=2280 I am personally at $3,025 on a goal of $5,000!! We can do it!!! We will be taking donations for this years walk up until about September, then we start to switch over for next years walk:)

And other good news, Jimmy John's is donating a 15 piece tray of sandwiches for our walk!! YEA!! AND Woo's Brew's is donating coffee!! YEA!!:) If you would like to see what else we are going to have at our walk, click here for my last post or click "older post" at the bottom.

Thanks so much everyone who keeps spreading the word about our walk and for posting my Great Strides link!! We've had such GREAT teamwork this year!! Our team has raised over $5,000!!! WOOHOO!!! That's mostly all thanks to friends and family who keep reposting my link or my blog!! THANK YOU THANK YOU THANK YOU!!! KEEP UP THE GREAT WORK!!! :)

Hope to see you Sunday at 11, b/c all our entertainment will be there starting at 11!!
M

ONE WEEK til our CF WALK!!!!

Only ONE WEEK until our 5th Annual Great Strides Walk for a CURE for Cystic Fibrosis!!! I'm so excited!! I can't wait!! If you haven't registered yet or donated, it's not too late!! It's on Sun May 4th, check-in is at 11 and the walk begins at noon at 266 Oldman Rd Wooster. Click this link to sign up under a team that you know(my team is A Cure 4 Lil' Chris;)...http://fightcf.cff.org/site/TR?pg=teamlist&fr_id=2280 Our new walker this year has passed me! They have raised more money than me at this point...that's AWESOME!! WAY TO GO McKenna's Maniac's!!! I'm not done yet though;p LOL

Here is what we are going to have food wise this year:
-Dominos Pizza
-McDonalds Happy Meals
-Panera Bread bagels
-Chips
-Buehler's fruit
-Water
-Soda
-Lemonade
-Cookies for dessert:)

Here is what we are going to have entertainment wise:
-Wooster Fire Truck
-Samaritan Ambulance
-Pat Catan's Craft Table
-Colored Hair Spray(CFers will be identified by having glitter spray in their hair along with purple or another color:)
-Dr. Dave the Science Guy will be making balloon animals:)

Here are just some of the prizes we will be pulling raffle tickets just for coming to the walk and donating:)
-2-Free 12oz cup of Frozen Yogurt at OH-YO's
-6-$5 Gift Card to Donatos
-2-$10 Gift Certificate to The Parlor Restaurant
-$25 Gift Certificate to El Campasino
-3-Free hair cut at Great Clips
-3 month membership certificate at Curves
-4-Free small combo at Arby's
-11-Buffalo Wild Wings scratch cards
-2-Akron Rubber Ducks Tickets
-4-One Large Pizza at Pizza Hut
-Free oil change at Wooster Lube Express
-$25 gift card to Staples
-$20 gift certificate to The First Amendment Public House Restaurant
-4-2 free items at Taco Bell
-Free bread once a week for a year at Panera Bread:)
-200-free small kiddie cup of frozen yogurt at Kate's Diner:)

And of course, you will get a free Great Strides T-shirt for a donation of $100 or more!! :)

We are working on getting a Hot Air Balloon, a DJ, and some more prizes:) It's going to be a lot of fun, so bring the whole family and don't forget to wear your walking shoes and sunscreen! Pray for great weather!

BIG THANK YOU TO ALL THE WOOSER BUSINESSES THAT HAVE SPONSORED US THIS YEAR!!! WE ALL GREATLY APPRECIATE IT!!! :)

BIG THANK YOU TO EVERYONE WHO HAS DONATED SO FAR!!! YOU ARE HELPING US GET CLOSER AND CLOSER TO A CURE!!! WE WILL ALWAYS BE FOREVER GRATEFUL!!
Thanks,
M