8th Annual CF Walk is this Sunday!!

Our 8th Annual Cystic Fibrosis Walk is THIS SUNDAY, May 7th at 266 Oldman Rd in Wooster!! Check in is at 11, and the walk begins at noon! It's free to go and there will be free food, snacks, drinks, balloon animals, fire truck, ambulance, police car possibly with K9's doing tricks, craft table, and more!! Let me know if you are coming!! It's fun for the whole family!! Please click this link to register to walk or donate/sponsor us to walk!!

BIG THANK YOU to those who have donated so far...Cara, Eva, Rafe, Danielle & Steven, Al & Nancy, Dad, Rachel, Marie & Sam, Dustin H, Mom, Stacy W, Martin & Jamie, & Dawn!! Thank you for helping Chris win the CF teddy bear and CF blanket too!! He LOVES them!! :)

http://fightcf.cff.org/goto/A_Cure_4_Chris 

I know I haven't posted in awhile, but like I always say...No news is good news!! :)

I haven't had time for much lately, because on 1/29/17, I got promoted to Store Manager of the Akron Kohl's!! :) I LOVE it and have a GREAT team!! Unfortunately, it doesn't leave me much time to blog, or do as much fundraising as I would like. Luckily my Mother-in-Law lives close and has been a tremendous help in getting things ready for our walk this Sunday!! Thanks Oma!! :)

As for an update on Chris, he has been doing well. He is up to 3 enzymes with every meal and snack now(he was at 2 with the new red pills). He also takes a chewable vitamin now instead of a gel one. He hates it, but we can't get the gel ones anymore:( He is still taking Prevacid daily and Claritin. His nose runs a lot during allergy season, so we are going to look into a different allergy medicine. I think he may have become immune to the Claritin because they keep him on it all year long and he has been taking it for a few years now.

He still does his Vest 30 minutes in the morning before school and 30 min at night before bed. Thankfully he has only had 1 bad cough this past year and only had to take an antibiotic once. I think it was right before Christmas. He still does well with his Pulmozyme neb every night. He even washes his neb cups now!! :)

The only area of concern right now, is that he has had to use his puffer(inhaler) more often recently because he gets these weird chest pains. We try to make it go away with manual CPT too. It usually seems to happen when he is at the soccer fields. So we have started giving him his puffer before we leave for practice or games now. He also has been getting a lot of stomachaches off and on. We mentioned it to the dr last time and she recommended he try new enzymes with his meals and snacks. They gave us one bottle to try, but it only has enough for one week. Not sure that's long enough to tell, but we are going to try it once school is out so the school doesn't get confused with which pills to give him. We are praying that this is the answer. Chris doesn't want to take them though, because he will have to take 5 of them instead of 3 with each meal and snack. I'll let you know how it goes.

He has his annual CF clinic appointment coming up in June where he gets his bloodwork done and is usually a 3-4 hour visit. Please pray all goes well and he gains weight and has a good PFT!!

Thanks again for all who donated and keep up with Chris' CF journey!! I'll try to post again in less than a year this time;p LOL

M

2016 CF Walk May 15th at 11am

As I am preparing for our 7th Annual Cystic Fibrosis walk, I realized that I haven't blogged in awhile. :o

I just wanted to let everyone know that this year our CF walk will be at the same location behind Ida Sue School on Sunday, May 15th. Check-in time is 11am and the walk begins at noon. We hope you can join us! It will be a lot of fun! We will have free food, entertainment for the kids, and more!!

Here is the link to register to walk with us or to donate for a CURE for Cystic Fibrosis in honor of Chris...
http://fightcf.cff.org/site/TR/GreatStrides/104_Northern_Ohio_Cleveland?px=1442439&pg=personal&fr_id=4810

THANK YOU SO MUCH TO THOSE WHO HAVE DONATED SO FAR...
DAD
DANIELLE
AUNT DONNA
DAWN

Big THANKS to Oma for collecting prizes and setting up fundraiser events!! I used to have so much more time and energy to do those kinds of things, but since I got promoted at work, it's been a lot harder. So THANK YOU, OMA for picking up my slack;)

Be on the lookout for our 2016 CF commercial on MCTV soon!! BIG THANK YOU TO MCTV for always running our commercial one month before our walk!

As for an update on Chris, he is doing REALLY well, Praise the Lord!! So when I don't update on this blog....no news is good news;) I pray I never had to update bad news.

This is Chris at his last 3 month checkup. He has to breathe as hard and as long as he can through that machine to see how his lungs are doing. His PFT number wasn't the greatest(85/94), but the doctor wasn't too worried at this time. Praying his results are much better when we go in June.

Here is Chris' new vest! He wanted a purple one, because purple is the color for CF. He said next time he wants to get a pink one for Cancer. Love this kids heart:) He does 30 minutes of his vest EVERY morning before school and EVERY night before bed to help him breathe easier. He is inhaling Pulmozyme in the picture, which he does EVERY evening. These are one of the many reasons we walk and raise money for a CURE for CF!! So that one day CF will stand for Cure Found!! :)
M

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

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

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

2014 Great Strides Commercial for our 5th Annual Wooster Walk

Here it is...our 2014 Great Strides Commercial for our 5th Annual Wooster Walk for a CURE for Cystic Fibrosis!!!! It will play on MCTV in Wooster starting in April until the day of the walk on May 4th. So, be on the lookout;)

BIG THANK YOU TO MY WONDERFUL HUSBAND FOR PUTTING THIS ALL TOGETHER ALL BY HIMSELF THIS YEAR, HE EVEN DID THE VOICE!! THANK YOU, HONEY!!!:)

Featured in the commercial are CFers...Lil' Chris, Harrison, Aden, Aubrey, and Sophia.

Harrison will be new to our walk this year...he's such a cutie:) It looks like we may have another new team this year too...McKenna's Maniacs. I haven't met them yet, but I look forward to meeting them at the walk:)

Our goal for the walk this year is a total of $22,000 raised and so far between all the teams, we are at $4,615. Not bad, but we got a long ways to go. So if you know of any businesses that would like to sponsor our walk, please let me know! We have different levels of sponsorship and we will advertise their business at our walk.

Also, our goal is to have 200 walkers and right now we are at 55, so please make sure you sign up today! It's easy to register, just click the team you want to join and then click "join our team" and answer a few questions and make a password. Quick and easy!! Usually I register most of my team for them, but with the new website this year, I found out that I can't. They have to register themselves, but luckily it's not hard and the best part is...whenever I share my team link, someone could donate towards ANY of my walkers!! That's pretty cool!! We can try to share the love:) Remember, if you raise $100 or more, you will get a free CF shirt at the walk:) All you have to do is ask 10 people to donate $10 or 5 people to donate $20!! Simple:)

Here is the link to all the teams, so all you have to do is click on the team you want to donate to or "Join" to walk or help raise money!! http://fightcf.cff.org/site/TR?pg=entry&fr_id=2280

I'll update more about all the fun things we are going to have at the walk soon:)

BIG THANK YOU TO ALL WHO HAVE DONATED OR SIGNED UP TO WALK SO FAR!!! WE ALL GREATLY APPRECIATE THE SUPPORT!!!!
M
PS. I posted the new commercial at the top of the blog also, and it will stay there in case you ever want to watch it again when you check one of my posts;)

Cough Update

Sorry it's been awhile, but I've been busy fundraising and organizing for our upcoming walk for CF on May 4th. This is our 5th annual walk!! I can't believe how time flies! Seems like yesterday I made the call to the CF Foundation to get a walk started here in our town since all the other walks are kinda far:)

I'll update you more on the walk later, but for now I'll fill you in on lil Chris...My last post was when he had that bad cough and we thought he was going to have to get an antibiotic for it...we'll, I'm happy to say that his cough went away on its own and I didn't even need to call the clinic!!! YEA!!!! I was so relieved!! He's has been doing great since!! Thank you all sooooo much for all your prayers!!! God definitely heard our prayers and answered them!!

Well, I gotta get back to fundraising... I'm in the process of writing a letter to the kids classes about joining us for our walk and raising money for A CURE 4 Lil' Chris;)

Keep checking back for some exciting news coming soon:)
M

4th Annual Great Strides Walk was a SUCCESS!!!

Our big 4th Annual Great Strides Walk for Cystic Fibrosis was this past Sunday and it was AMAZING!! We had about 150+ walkers and raised about $20,000 dollars!!! WOOHOO!!!!

Our first year we only had about 50 walkers and only raised about $5,000...I'm so happy how our walk has grown and multiplied!! The more walkers=more money raised=the closer we are to a CURE!!! :) 

Our first year, everyone was able to stand under the pavilion and I would just stand on a table to talk, but this year there were so many walkers, that the only thing that would work was the loud speaker from the Ambulance:) And then Officer Cruz was nice enough to start the walk off with his siren! That was pretty cool! Maybe next year I'll see if Lil' Chris can push the button, that would be neat:)

This year was the first year I had to do all the announcements and everything, b/c Nate from the foundation had to go to another walk. I didn't mind doing it, but I felt bad that I wasn't more prepared. I got up there and completely went blank on a lot of our sponsors:( Next year I will def make a list and be sure to mention all of our sponsors!! So... since I can't go back in time and add them to what I said...I'll just mention them now on my blog(please feel free to share this blog post;) lol....

BIG THANK YOU TO OUR SPONSORS...
Panera Bread donated 100 yummy bagels. THANKS JESSICA!!!
Domino's on Burbank donated 25 yummy pizza's. THANKS VIC!!!!
McDonald's on Burbank donated 30 cheese burgers and french fries. THANKS LINDA and CHRISTIE!!!
Kohl's in New Philly, Medina, and Wooster=$1,500 for the day of the walk!!! WOOHOO!! By Sept, Kohl's will have donated about $7,000 total, and that's just OUR team, not all over the country!! Gotta love Kohl's!!!! If you don't shop Kohl's now.....you gotta start!! They raise millions for Cystic Fibrosis!!!
Wooster Christian School team had 8 different families that were there supporting Lil' Chris:) THANKS EVERYONE!!!
Preferred Wireless Sprint in Wooster
Verizon Wireless on Milltown Rd in Wooster
Wayne Savings Community Bank in Wooster
Starmark Farm in Wooster
General Building Maintance Corp. 
An anonymous $250 sponsor
The Faithful Little Cupcake
Feikert Concrete
Uncle Jim's Pepper Mustard
Pat Catan's
MCTV
Akron Aeros
Buehler's
Wooster Fire Dept
Wooster Police Dept
Samaritan Care Ambulance
Dr. Dave and his AMAZING balloon animals:)
Carrie G-Thirty-One
Stephanie W.-Arbonne
Lu Ann Miller
Phyllis and Reed Seiberling
Tim and Jessica Corbett
Kathi Bond

Overall, we had a BEAUTIFUL day for our walk, a little windy when I was trying to tape down all the prizes and when we all were trying to put up our canopies, but still a gorgeous day!! 

BIG THANK YOU to my fellow CF moms Samantha, Denna, and Alma for all their help!! Denna made little goody bags for all the kids, and made BEAUTIFUL signs for all the CF kids so the walkers could read a little bit about who they were walking for and why. Samantha got LOTS of prizes and I'm happy to say that I actually ran out of raffle tickets!!! That's the first time EVER!!! I still had stuff to give away, but there were no more names in the bucket!! WOW!!! That's awesome!! Thank you Alma and team for all the yummy cookies!!

BIG THANK YOU to Nate for bringing and setting everything all up, and to everyone else who helped out in setting up too...my husband, Spencer, Oma, Opa, Jessie, and Kevin!! I was so thankful that Kevin volunteered to take pictures with his awesome camera this year!! THANK YOU KEVIN, you're the BEST!!! I will post the pictures when I get them:)

THANK YOU to our CFers who we walked for...Lil' Chris, Daniel, Jack, Aden, Sophia, and Aubrey!! You guys did a GREAT JOB wearing your Hawaiian leis the whole time and staying away from each other, because of the risk of cross contamination!! So proud of you all!!

SPECIAL THANK YOU to all who walked for "A Cure 4 Lil' Chris!!" I would name you all, but there were so many, about 80!! That's AWESOME!!!;) We had lots of family, friends, co-workers, neighbors, and  classmates!! I'm sorry I didn't get to go around and talk more with you all. You all brought tears to my eyes with how many showed up just for Lil' Chris!! We can't thank you all enough for giving up a Sunday to walk, and for all your generous donations!! 

BIG THANK YOU to my sister and her kids for driving all the way from NC to walk for Lil' Chris:) We had so much fun at the walk, at Put-in-Bay, and Acres of Fun mini golf!! Can't wait to see you guys again!!

Thanks again everyone who walked, donated, or sponsored our walk!! It sure was a SUCCESS!!! More pictures coming soon!!! :)
M
PS. Update on Lil' Chris' CF clinic visit this last Wednesday coming soon!!

4th Annual Wooster Great Strides Walk is TODAY!!!

TODAY IS THE BIG DAY!!!! OUR 4TH ANNUAL WOOSTER GREAT STRIDES WALK FOR A CURE FOR CYSTIC FIBROSIS!! IT'S NOT TOO LATE TO DONATE!! CLICK HERE TO DONATE AND HELP FIND "A CURE 4 LIL' CHRIS" AND ALL WHO SUFFER FROM CYSTIC FIBROSIS!!!!

What is Great Strides???.....
In cities all across the United States, tens of thousands of people just like you are showing their commitment to "adding tomorrows" to the lives of those with cystic fibrosis through the simple act of walking.
Year after year, volunteers make every Great Strides walk site both fun and successful. Their dedication has helped Great Strides become one of the country's most effective and efficient fundraising efforts. Since the first Great Strides walk in 1989, millions have been raised to support the vital research and care programs of the Cystic Fibrosis Foundation.

Why We Stride???.....
In 2012, nearly $40 million was raised to help support life-saving research, quality care, and education programs. Real progress toward a cure has been made, but the lives of young people with CF are still cut far too short. We urgently need the public’s continued support to fulfill our mission and help extend the lives of those with the disease.
Great Strides is the Cystic Fibrosis Foundation's largest national fundraising event. More than 250,000 walkers come together each year as one community for one cause…to help find a cure for CF. I would like to thank all those who are going to be at our walk today to be a part of a CURE for Cystic Fibrosis!!! Your support really means a lot to all of us CF families!!!! THANK YOU!!!!


SEE YOU AT 11AM!!! I'M SOOOOO EXCITED!!!
M

Day 4 CF Awareness / Are you a CF carrier??

 Meet Aden...a new CF team:)

 Meet Aubrey...another new CF team for this years walk:)

May is CF Awareness Month, so I will try to update everyday this month. Here is Day 4...

Did you know that more than 10 million Americans are unknown, symptomless carriers of Cystic Fibrosis?? They carry the defective CF gene. My 2 sisters and my sister-in-law and my husband and I are all CF carriers. None of us ever knew until my middle sister was tested in 2003 while she was pregnant. Then my older sister was told during her 3rd pregnancy (they didn't do that testing with her first 2 pregnancies). My sister-in-law found out during her first pregnancy. Fortunately their husbands were not carriers. Both my husband and I carry the Delta F508 defective gene, which we found out after Lil' Chris was born. We never knew it until Lil' Chris was already conceived. Therefore, Lil' Chris was born with Double Delta F508, which is the most common CF gene. In order for someone to have CF, they must inherit a defective CF gene from both parents.
Each time 2 carriers of the defective gene conceive, there is a 25% chance that child will have CF, a 50% chance that child will be a carrier, and a 25% chance that the child will not have the CF gene at all.
The odds remain the same with each child. The severity and symptoms of the disease vary considerably due to different mutations of the gene. As of right now, we have been told that Ayla is not even a carrier! We are going to get her re-tested just to make sure.

We are all ready for our big CF walk tomorrow!!! My sister and her kids are here from NC and are going to walk with us!!! YEA!!! They were here for our very first Wooster walk, and now they are going to get to see how much our walk has grown:) I registered all my walkers that I know of, and there are about 80!! WOOHOO!!! It means sooooo much to have sooooo many support Lil' Chris. I can't even put our appreciation into words! And we have so many that donated but can't make it to the walk that we greatly appreciate too!!! THANK YOU ALL!!!

Here are the happenings for the walk tomorrow...

We will get there to set up around 9 or 9:30
Panera Bread will be there at 10:30 with yummy bagels:)
There will be fruit, water, juice, and lemonade
The Ambulance will get there around 10:30 and be there for the whole walk, I believe
The Fire Truck will be there from 11-noon
Pat Catan's Craft Table will be there at 11
Police Car will be there around 12:30-1:30p
Dr. Dave will be doing balloon animals
Domino's Pizza will arrive at 12:30
McDonald's cheese burgers and french fries will be there around 12:30
There will also be yummy cookies, chips, crackers, and more
After the walk, there will be many awesome prizes too!!! YEA!!!!

Hope to see you there!!!
M
PS. Please continue to pray for Tricia(adult CFer), she desperately needs new lungs, but is stable right now on a ventilator.

Day 2 CF Awareness / Sponsor / Pray for Tricia

For Day 2 of CF Awareness month, I wanted to share this awesome news about the great results they are having of the combination of Kalydeco and VX 661! This is for those who have DF508 CF genes, like Lil' Chris. Click the link below to read all about it and other trials they will be starting too!!...


http://www.cff.org/aboutCFFoundation/NewsEvents/2013NewsArchive/4-18-Phase-2-Combo-Study-Kalydeco-VX-661-Results.cfm


Great news!!! We just got another sponsor for our walk this Sunday!!! BIG THANK YOU to Starmark Farm for being our Single Rose Sponsor!! YEA!!! THANK YOU THANK YOU THANK YOU!!!

The walk is this Sunday at 11am behind Ida Sue School!! I can't believe it's time already!! We have everything set and ready to go and have some fun!!! We will be collecting any money you have raised or any donations you would like to give personally. If you raised or donated over $100, you will get a CF t-shirt!! YEA!!!

If you haven't registered yet, click my Great Strides link in the upper right hand corner of my blog and "join my team" or "click to donate" today!! Thanks!! 

I found out that the New Philly Kohl's and possibly Medina and a couple others might be at our walk too!! WOOHOO!!! Those $500 grants sure can do a lot to help us find a CURE for CF!!! THANK YOU KOHL'S!!!!

Hope to see you there!
M
PS. Please keep Tricia in your thoughts and prayers. She is an adult CFer who desperately needs a double lung transplant ASAP!! Are you an organ donor? If not, sign up today and you could save up to 14 lives!!

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

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

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:)

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 ;)  

Walk/Commercial Update / Big Thank You's :)

The new commercial for our CF walk is in the mail to Clear Picture!!!! WOOHOO!!!

BIG THANK YOU to MCTV for helping spread the word about Cystic Fibrosis and our Great Strides Walk!!!

Pretty soon it will be playing all over Wooster and possibly Massillon!! They usually play it one month or so before our walk, and our walk is only a month and a half away!! I'm getting very excited!!! I can't wait!! This year is going to be GREAT!!!

We are going to have Domino's Pizza, McDonald's, Panera Bread bagels, fruit, water, soda, Pat Catan's craft table, different emergency vehicles for the kids to explore, and of course Dr. Dave and his wonderful balloon animals:) There will be lots of prizes given out too just for coming and joining our walk and donating:)

If you would like to sign up under our team "A Cure 4 Lil' Chris," just click here or click the Great Strides logo on the right side of this blog and click "Join My Team"!! It's that easy!! You can even make your own team and be a team leader if you want!!

If you don't live around here, but would like to still participate, you can go to cff.org, click the Great Strides link, and then search for a walk in your area!! We have many walks all over and you can even create a team for Lil' Chris and walk for him!! My sister-in-law does this in NJ, and my sister D does this in NC, but this year she is driving out to join our walk!! YEA!!! :)

Also, if you can't walk, but would like to donate, click here. I haven't ordered my thank you cards with Lil' Chris' pic on it yet, but I hope to today;) All who donate will receive one:) I know some who line them up on their fridge year after year and compare how big he has gotten and how many new treatments were added in just one year. Plus...he's a pretty cute kid...who wouldn't want his pic on their fridge;p Hee Hee!!! You can always mail me a check if you don't like using the computer:) Just make it out to Cystic Fibrosis Foundation. Email me for address.

And.... if you can't walk or don't have the money to donate right now, you could always ask your company if they would sponsor our walk(or you as a walker) or donate something for the prize giveaways at the walk! Also, you could send out a quick email to your whole address book and tell them of Lil' Chris' story and ask for donations. You can share my blog or my Great Strides link with them:) I know a few people who have raised a couple hundred dollars for Lil' Chris this way:)

BIG THANK YOU to Sprint Preferred Wireless in Wooster for being our Kick Off Sponsor!!  Thanks so much Kevin W. for contacting them and walking again this year!!:)

Another BIG THANK YOU to Wayne Saving Community Bank in Wooster for sponsoring our walk by being our Single Rose Sponsor!! Thanks so much Jeanette H. for setting that up and for walking this year!!:)

Big Thank You to all who bought something from my Thirty-One and Arbonne CF Fundraisers!! We GREATLY APPRECIATE IT!! I don't have the totals in yet, but when I do, I'll let you know how we did:) BIG THANK YOU to Carrie G. and Stephanie W. for donating their commission from the parties:) You girls ROCK!! If you would like to set a party with them, just let me know and I will get you their contact info:)

If you have any questions, please let me know!!
Thanks everyone,
M