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!!

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;)

Thirty-One CF Fundraiser Results

Hopefully this posts, I've tried like 20 times to post it and have had to re-type it 2 times! ARG!!! Sorry it took so long to post, but here are the results...

WE REACHED OUR GOAL FOR THE THIRTY-ONE Fundraiser for CF!!! WOOHOO!!! THANK YOU EVERYONE WHO ORDERED SOMETHING TO HELP FIND A CURE FOR CYSTIC FIBROSIS!!!...

Danielle

Chantel

Jeanette & friend:)

Andrea S

Stacy W

Samantha C(fellow CF mom:)

Rachel M

Barb N

Stacie M

Amanda P

Samantha S

Margo F

Donna H

Steph W

Sue D

Rebecca G

Melissa C(fellow CF mom:) 

Carrie G

I can't begin to put into words what it means for all these girls to support Lil' Chris like this!!! It means soooooo much!! BIG THANK YOU to Carrie for donating her whole commission for A Cure 4 Lil' Chris and ALL CFers!!! You're the BEST Carrie!!! :)

Our goal was to have $1,000 worth of products ordered so that we could raise $250 plus the $500 from the Kohl's team for helping out at the fundraiser, which equals to $750 raised for a CURE for Cystic Fibrosis!!! WE DID IT!!! WOO HOO!!!!!!  

We have surpassed my personal goal of $5,000 now for our walk for CF!!! We are at $5,673.90!!! Woo Hoo!!!
We have even passed our team goal of $7,000 too!!! It doesn't show it on my Great Strides page yet, but we are still waiting on about $2,000 to come from Kohl's grants from my CF fundraisers! Kohl's alone has donated $4,000 so far this year!!!! AMAZING!! My goal was $5,000 like last year, so I better set up 2 more AiA events;-) We couldn't raise that much if it wasn't for my awesome Kohl's employees!! They are the BEST!!!! 

Here are some pics of the kids modeling our new Thirty-One bags. They LOVED their bags!! Ayla said "That's A for me!!!" LOL(I got her initial on one of the bags for her;)

Thank you again everyone!! I'll probably do another Thirty-One fundraiser for CF next year, or when people start asking me to do one b/c they want to order some stuff;-) I already know one friend who wants to order some more:)
M
 PS. If you missed NY Med about the 26 year old girl with CF, click this link to watch the episode(it shows other people too, but you might be able to fast forward through them if you don't want to watch them too)...http://nymedshow.com/episodes/episode-6

Cough is worse;( New Antibiotic / Fundraiser Results for the year!!

I had to call the CF clinic today to ask for some kind of antibiotic, b/c Lil' Chris was coughing his head off all day!!! Before he started preschool, we thought his cough was getting better, but it definitely turned for the worse!! They said his throat culture result was the same as usual, MSSA, but I wonder if they took a culture today if it would be something different. I just hope that this antibiotic kicks in quick and he gets rid of this nasty cough really soon!

They prescribed a different antibiotic this time. It's called Omnicef. He has never had this one before and so far he really likes the taste of it:) YEA!!! It's not all goopy like the Ceftin. It reminds me more of the Augmentin, but it doesn't need to be refrigerated. He takes 5ml every 24 hours, so it's kinda nice not having to do it 2 times a day too:)

Lil' Chris and Ayla have had some runny noses too, but I think it is just allergies, b/c mine have been acting up too. Plus, I have shared food with them and I haven't caught a cold or anything. This is probably where the cough came from. The CF nurse said to do his Vest 3-4 times a day and do Albuterol every 4 hours as needed for his cough. I have been doing some manual CPT on him off and on, and it seems to make him cough more which is good to help him clear the mucus...if only he would cough it up and spit it out!! It reminds me of the old days when we used to have to pound on him every morning and every night as a baby;(

On August 31st, I had another CF fundraiser at CiCi's Pizza. This was my 9th one this year and thanks to my awesome fellow employee's, Kohl's gave a grant of $500 each time!! They also gave $500 for our CF Great Strides Walk too!!! So that brings the total to $5,000 just from Kohl's!!!!! This was our goal and it is the most we've raised in only ONE year from Kohl's alone for Cystic Fibrosis for Lil' Chris and ALL CFers!! I'm so proud to work with such GREAT associates and for such a GREAT company that supports such GREAT causes!!! The Lord really knew what he was doing when he put me at Kohl's 8 years ago! Now if only they would promote me.....;-) LOL!!!!
BIG THANK YOU to my girls at Kohl's who helped me out with the last fundraiser...

Patty K

Barb

Esther

Donna

We raised a total of about $680 that night!! Overall this year, our total from doing these CiCi's Pizza fundraisers is over $6500!!!!! Woo Hoo!!!! BIG THANK YOU TO KOHL'S AND CICI'S PIZZA AND MY AWESOME KOHL'S ASSOCIATES!!!!!!!!! THANK YOU THANK YOU THANK YOU!!!!!!!

BIG THANK YOU TO EVERYONE WHO WALKED & DONATED THIS YEAR & WHO HELPED RAISE MONEY FOR CF AND FOR LIL' CHRIS!!! Everything is not in yet, but our total should be around $9,000!!!! Last year we raised almost $7,000:)

Please pray Lil' Chris' cough goes away soon. I'll keep you posted,

M

8th Successful CF Fundraiser / Save the Date for my last 2 CF fundraisers!!

We had another GREAT CF fundraiser at CiCi's Pizza last night!!! The night seemed to fly by for me, b/c it was so much fun hanging out with my Kohl's girls and all my wonderful neighbors that came out to support Lil' Chris and CF!! THANK YOU THANK YOU THANK YOU!!! Our total raised was about $720!!!

Big THANKS to my AWESOME Kohl's associates who volunteered their time to help us raise $500 from Kohl's again, which brings our total so far to $4,500 just from Kohl's this year!!! THANK YOU KOHL'S!!...

Sharon(this was her 4th one in a row, I think!! You ROCK Sharon!!)

Rebecca(my recruiter:) Thanks Rebecca!;)

Esther(her 2nd one in a row, thanks Speedy;)

Patty(I think this was her 2nd one in a row too! Thanks old babysitter;-)

Special thanks to all my FANTASTIC neighbors for their support...

Carrie, John, & Gideon(hope your finger feels better Gideon;)

John's parents(sorry, I can't remember their names;)

Rachel, Seth, Brayden, & Jordan(your kids are too cute:)

John S. (thanks for the tips on hopefully getting the piece of land next to us;)

Jeff(thanks for sticking around afterwards and eating with me, it was nice chatting with you;)

You guys all ROCK!! I CAN'T THANK YOU ALL ENOUGH!!!

Congrats to Amanda for winning the raffle prizes!!! Thanks for your donation!!!

SAVE THE DATE: My next/LAST 2 CiCi's Pizza CF fundraisers for this year will be...

Tuesday 8/16 from 5-8pm. Raffle will be $25 gift card to El Campesino, 2 movie tickets, & Buy One Get One Indians ticket.

Wednesday 8/31 from 5-8pm. Raffle will be 1 hour massage at Tips, Toes, & Beyond, and Buy One Get One Indians ticket.

Hope to see you all there!!

M

PS. Thanks Oma for babysitting:)

CF Fundraiser Thurs 6/30 5-8p at CiCi's

Join us Thurs 6/30 between 5-8pm at Wooster CiCi's Pizza to support Cystic Fibrosis and Lil' Chris! Raffle is for 2 tickets to an Indians game of your choice in August or September!!!

We raised $230 last time with this raffle, so hopefully we will have another GREAT night!!!

PLEASE SPREAD THE WORD!!!

Special thanks my awesome Kohl's team for signing up to help out...

Esther

Kathleen

Sharon

Karen R

Thank You Girls!!! Your support means sooooo much!!!!

CF Fundraiser Tonight at CiCi's Pizza 5-8pm

Join us tonight between 5-8pm at Wooster CiCi's Pizza to support Cystic Fibrosis and Lil' Chris! Raffle is for 2 free tickets to an Indians game of your choice!!!

Special "thank you" to my fellow Kohl's associates... Jill, Rebecca, Sharon, and Patty for volunteering their time tonight to help out so that Cystic Fibrosis will get another $500 grant from Kohl's!!!

YEA!! THANK YOU GIRLS AND THANK YOU KOHL'S:)

This CF fundraiser will put us at $3,000 raised from Kohl's alone this year!!! WOW!! 4 more events and we will be at our goal of $5,000!! WooHoo!!! I've got some pretty awesome Kohl's associates, don't I :-)

Walk for "A Cure 4 Lil' Chris" / Thank You Sponsors!

Exactly one week from today, we will be walking for "A Cure 4 Lil' Chris" at the Hewitt Cowles Pavilion by Ida Sue School at 9am!!! It's not too late to sign up to walk or to sponsor me!! Click this link to get started...http://www.cff.org/Great_Strides/LilChrisChris6765 or you can mail me a check made out to Cystic Fibrosis Foundation, just put "A Cure 4 Lil' Chris" in the memo:)

It's going to be a lot of FUN!!! There will be...

• Bagels from Panera Bread



• Pizza from Domino's



• Happy Meals from McDonald's



• Chips from Frito Lays



• Fruit from Buehler's



• Cookies/cup cakes made by Alma(fellow CF mom:) and her friends



• Water from Culligans



• Ice provided by Speedway

There will also be some fun entertainment for the kids, so bring the whole family:)...

• Wooster Fire truck for the kids to explore



• Wooster Police car for the kids to explore



• Craft table provided by Pat Catan's



• CF temporary tattoo's



• CF Frisbee's



• They can even ride their bikes on the beautiful walking path:)

If you bring at least $100 in sponsors, you will receive a FREE Great Strides T-shirt!! :)

Special thanks to Clear Picture for airing our CF commercial about our Great Strides Walk!! I will be taking pictures at this years walk for next years commercial;) Thanks to the Daily Record for the beautiful article about CF and the walk too!! Thanks so much for helping spread the word about Cystic Fibrosis!!!

Thank you to those who have sponsored me so far, in no particular order...

Aunt Mar

My Daddy

Uncle Joe and Aunt Diana

Elizabeth & David

Gram D

Aunt Caroline

Carol S

Al S.

Audra C

My mom

Katy & Joe U

CiCi's Pizza

Also, special thanks to my sister D, my SIL Steph, Oma & Opa, and Amy K for raising money for A CURE for Lil' Chris too with their own Great Strides page and their own walks in NJ and NC!! THANK YOU TO ALL WHO SPONSORED THEM!!!

BIG THANKS to my fellow Kohl's associates for volunteering their time to go to FOUR "Associates In Action" events at CiCi's Pizza so far and raising $2,000!!! YEA!! Our goal is to raise $5,000 by the end of Summer:) After the walk next Sat, we will be 1/2 way there:) Gotta LOVE KOHL'S and their AWESOME employee's;)!!!

I hope everyone has a very Happy Mother's Day, esp my fellow CF mamma's...squeeze those kids a little bit tighter, even if they don't want it...they have to, it's YOUR DAY:)!!!

M

PS. May is CF awareness month, so I've been doing "31 day's of CF" on Facebook if anyone wants to follow. I post a little bit about CF everyday:) I may post them all on here eventually:)

CF Fundraiser Results!!!!

Jayde getting her face painted by Melissa :)

Our CiCi's Pizza CF fundraiser the other night went GREAT!!! We even did face painting this time:) Thank You Melissa for your great art work!! ;-)

In total, we raised about $750!!!!! Woo Hoo!!! So far, Kohl's has raised $1,500 for our Great Strides!! My goal is $5,000:) We CAN do it!!

BIG thank you to my fellow Kohl's associates for volunteering their time to come and help out so that we would get the $500 grant for Cystic Fibrosis. You girls ROCK...

Melissa M.

Beth Z.

Sharon H.
Sherri M.

One particular couple touched my heart, b/c while they were there eating, they put my event on their facebook page so that their friends and family would come and support CF too!! Isn't that AWESOME!! They have been to a couple of my fundraisers now:) Thank You guys!!!

Special thanks to some of my awesome neighbors who came to support Lil' Chris...

Carrie & Gideon

Ryan, Tiffany, Jayde & Rylee

My next CF fundraiser at CiCi's Pizza in Wooster will be on Thurs May 5th from 5-8p, so spread the word!!

Our Great Strides walk will be on Sat May 14th at 9am at the beautiful walking path by Ida Sue School!! It's going to be a lot of FUN!! So spread the word and bring the whole family:)

This weekend Nathan, Lincoln, Tyler, Uncle Greg, and Aunt Steph are in town, so the kids are having a BLAST playing with their cousins:) Thank the Lord all of our colds are gone and that Lil' Chris doesn't have a bad cough...although he did wake up coughing this morning, but hasn't much since. And thank the Lord that Nathan is doing well:)

I hope everyone has an AWESOME Easter!! We will be doing an Easter egg hunt today, then go see HOP the movie, and then dying Easter eggs:) YEA!!

HAPPY EASTER!!!

M

CiCi's Fundraiser / Thank You's:)

Last nights CF fundraiser at CiCi's Pizza was a hit!! LOL :) It's a long story, so I'll spare you the details...I will tell you that the downpour of rain did not help the situation any;-) LOL I'm just glad that my SIL's poster of Lil' Chris didn't get all wet and ruined.

Thank You to Josh from Welcome to Joshland for the AWESOME flyer he made for me to put out at my fundraisers!! THANKS JOSH!! I put them on yellow paper and they looked AWESOME!!

Special thanks to some friends that ventured out into the rain to come support Lil' Chris...

Vickie D and her husband

Sean and Michelle(thanks guys for your generous donation:)

BIG THANKS to my Kohl's girls...

Jill

Stacie M

Melissa M

and Donna H who saved me by coming at the last minute to be my 5th person to get the $500 grant! THANK YOU DONNA!!!

Woo Hoo 2 under our belt!! 8 more to go to hit our goal of $5000 raised just from Kohl's AIA events!! WE CAN DO IT!! It's for a GREAT cause:)

My upcoming events at Wooster's CiCi Pizza from 5p-8p are:

Wed April 20th (this was April 21st, but I changed it to the 20th)

Thurs May 5th

Thurs May 26th

And don't forget....our 2nd Annual Walk for a Cure for Cystic Fibrosis will be on May 14th at 9am at the Hewitt Cowels Pavilion by Ida Sue School in Wooster!!! ....Wow, I just sounded like my commercial! LOL!! Everyone at work keeps telling me that they have seen my commercial a bunch of times:) Some tell me it's creepy b/c they keep hearing my voice in their living room;-) LOL!! I went to Best Buy the other day to drop off some papers for volunteers for the walk, and the manager said "Yeah, I know what your talking about, I've seen the commercial for it!" :) LOL! Thanks again Clear Picture for playing our commercial so much! You guys ROCK!! (if you haven't seen it yet, it's posted on this blog under the header pic at the top:)

Click here to sign up today to walk, or if you can't make it you can always click here to donate:)

Another BIG THANK YOU to Amy K from work. She has raised $135 in sponsors already!! I asked her how she does it b/c she raised a lot last year too, and she said "It's no big deal, I just type up a letter and email it to my friends and family and then they donate!" Wow, You Go Girl!! THANK YOU, THANK YOU, THANK YOU!!!!!!!!

Thanks everyone!

M

PS. Coming soon....a BIG thank you to all my sponsers so far for my Great Strides Walk 2011:)

Our 2010 Walk for a Cure for Cystic Fibrosis!

Photo and video editing at www.OneTrueMedia.com

We had a GREAT day today at our CF walk:)

We had a great turnout, about 70 people. Not bad for our second year!!

We had lots of food and a whole lot of fun!! =)

Thank you to everyone who contributed to this fabulous day:)

Thank you to all our walkers and all who sponsored me and Lil' Chris:)

WE GREATLY APPRECIATE EVERY PENNY!!

Thank you to all of our food sponsors:

Panera Bread

Buehler's

Domino's

Papa John's

Pizza Pan

McDonald's

Culligan's Water

And Thank You to our wonderful prize sponsors:

Special Thank You to our entertainment:

Pat Catan's Craft Store

Wooster Fire Department

Our Balloon Maker: David Lohnes

You guys were AWESOME!! The kids had so much fun!! And so did I;-)

Last year our walk raised a total of $7,500, I think. By the end of this year, we will have raised close to $13,00!!! WOOHOO!!! Kohl's alone will have brought in a total of $5,000!!! THANK YOU TO ALL MY WONDERFUL KOHL'S ASSOCIATES THAT HAVE PARTICIPATED IN MY CF FUNDRAISERS AND WALK!!! YOU GIRLS ROCK!!

Thank you to Jack's Pack and Daniel's Friends for all your donations and support:)

Especially thanks to all those who say a special prayer for Lil' Chris each day and for ALL those suffering with Cystic Fibrosis! We greatly appreciate it!

As great as a day as it was, I was still sad every time I got a second to look around, b/c I knew Lil' Chris would have LOVED EVERYTHING!! He's at that age now where he would have LOVED the Fire Trucks, he would have LOVED the craft, and he would have LOVED all the balloon animals. Most of all...he would have LOVED just being there and running around. Maybe someday I will get up the nerve to take him. It's just hard with the possibility of cross-contamination.

M

PS. If Lil' Chris' cough doesn't get any better by Monday, I'm going to call the CF clinic to get an antibiotic. He is not sounding too good;( Please keep the prayers coming.

Walking for a Cure for CF Today!!

Here is another photo from our lunch yesterday with Daddy. Lil' Chris and I are wearing our matching CF shirts:) Sorry the pic is a little dark;)

TODAY IS THE BIG DAY!! IT HAS FINALLY COME!!

We are meeting at the pavilion next to Ida Sue School by the soccer fields at 9am!! If you would like to join us, but are not registered...that's ok! Come on down for some fun:) The address is 266 Oldman Road.

So far I don't think it is raining. Please pray that it holds off until after our walk is over!! If it does rain, I think we will be ok. I bought some extra crafts for the kids to do for Conner and I got Domino's to have the pizza's ready by 10am. Do you think pizza at 10:30 in the morning is too early??? LOL I think it will give us something to do in the rain, plus then people can leave earlier, b/c I'm sure they will be anxious to leave if we are all crammed under one pavilion:) lol

As of right now, my team is at $4,726!! Woo Hoo!! My goal is $5,000. Hopefully after today we will be closer to that goal if not surpass it;)

Thank you again everyone who has donated!! You are saving some really awesome precious lives;-) Thank You!!

It's not too late to donate...click this link to donate today... http://www.cff.org/Great_Strides/LilChrisChris6765

I think we've got everything ready to go for today...

Alma and her team has made a ton of yummy cookies

Mary picked up the Frito Lays lil' bags of Chips

My hubby picked up the Culligan's water

and as soon as the sitter gets here, I am going to pick up the fruit from Buehler's,

bagels from Panera Bread,

and ice from Speedway.

Then starting at 10am, my hubby will start picking up the pizza's starting with Domino's, then Pizza Pan at 10:30, and then Papa John's.

Then he will pick up 30 kids meals from McDonald's at 11am:) YEA!!

Everything has been donated by our AWESOME sponsors!!! Thank You Awesome Sponsors=) Our walk couldn't be a success without you:)

I'll let you know how everything goes. I'll try to take lots of pics, especially everyone who is wearing something red for Conner and Eva:) Also, I plan on taking a BIG group pic for next years commercial:)

Pray for a GREAT day!

M

CF Great Strides Walk Tips & Tricks

Phewwwwww...I got a lot done today for our walk for a cure for Cystic Fibrosis coming up on May 1st!! I'm not sure how, b/c I only got about 4 hours of sleep this morning. I had an overnight shift at work last night, so I got home at 6:30am and then got to sleep until about 10:30 or 11am when my hubby had to go to work. For some strange reason I wasn't tired at all and had lots of energy:) ANDDDDD for some strange reason the kiddos were especially good and playing quietly!!! :) So I took advantage and started making some calls and got food, water, and entertainment for our walk!!! YEA!!

Here are some tips if you are starting a walk in your area, or are part of the planning team;)....

1. Set a goal for yourself....example: "Today I am going to get all the food we need for our walk!"
2. Make connections...the first year is very important. Last year was our first year and I went around town from store to store trying to get food, drinks, ice, and prizes donated. It was a lot of work and time away from the family, but it definitely made this year A LOT easier. Instead of going out to each place...I just called them up and asked to speak with the manager, and then asked if they would be able to donate again like last year! Most of them said..."Well, how much did we do last year?" I told them and they said "We can do that again:)" It was that easy!!! I was shocked!
3. Store contacts in your phone for next year...Last year I wrote down all my connections so I knew who to call this year(that was a HUGE help;). This year, I saved all the phone numbers in my cell phone with the contact name, so I know who to ask for next year. For example: April is my contact at Domino's, so I stored her in my phone as "Domino's Pizza April". So next year when I call, I'll just ask to speak with April instead of the manager, plus she may remember me and that may make it easier to get the donation;-)
4. Start your "walk day/week before list of things to do" now...as you are making your calls, you will have to set up different times to pick up the products and whatnot. So start your list of who is going to pick up what, when, and where. For example: My husband is going to pick up the water on Thursday before our walk at Culligan's. This list will help you not to forget about anything. Don't forget to add calling the local radio stations, local newspaper, and local TV station a week or 2 before your walk to get them to advertise it;-)
5. Make a reminder call the day before your walk...last year I didn't, and it ended up biting us in the butt!! There was one pizza place that didn't show, and when I called them they said they had no record of it. If I would have called, there wouldn't have been a problem. Luckily we got pizza from 2 other places too and 30 happy meals for the kids:)
6. Remember to have fun...don't let the stress get to you, delegate if you can. Your walk day is a day of celebration! Join in and celebrate all the wonderful money raised to help find a CURE for Cystic Fibrosis!!
7. Send Thank You cards...Don't forget to send thank you cards to all your sponsors and donors;) You can even make them up ahead of time and give them to your sponsors as you pick up the pizza for instance;)

I hope this helps someone, somewhere;) Let me know if you have any questions.

So as of right now, we have the following for our walk...

1. 100 bagels from Panera Bread
2. 5 large pizza's from Domino's
3. 5 large pizza's from Papa John's
4. 5 gallon cooler of water from Culligan's
5. 2 cases of water bottles from Gary's Liquor Store
6. Fire Truck coming for the kids
7. Pat Catan's craft store doing a craft table for the kids
8. Our local TV station is going to air our commercial for our walk starting in April

Things still to do...

1. Get about 5 more pizza's, chips, clown/chemist to make balloon animals, contact local newspapers, and radio station.
2. And of course...get more donations;-)

I'll keep you posted. Have a GREAT week:)

M

Great News!!

Great news for the CF community!!!! A new antibiotic has been approved by the FDA!!! Here is the email from Bob Beall explaining it....

Dear Friend,
We have a new antibiotic in the arsenal to help fight the life-threatening infections associated with cystic fibrosis.

Yesterday, the FDA approved an important new inhaled antibiotic called Cayston® (aztreonam for inhalation solution) for the treatment of CF. The drug was made possible by significant support from the Cystic Fibrosis Foundation, including an early $1 million investment to help develop the therapy.

Developed by Gilead Sciences, Inc., Cayston offers a much-needed antibiotic alternative for CF patients who battle recurrent lung infections and develop resistance to existing antibiotics.

Cayston is administered with a new device called Altera that allows patients to take the medicine in less than five minutes, a fraction of the time required for other inhaled antibiotics.

This shortened delivery time reduces the burden on patients, who -- on average -- have a treatment regimen of three to four hours per day.

Cayston will be available by the end of next week. Patients interested in learning more about Cayston should consult their physicians.

The approval of Cayston demonstrates that our drug development model, fueled by donors and volunteers like you, is working and making a real difference in the lives of people with cystic fibrosis.

To help continue our progress in the fight against CF, please consider making a tax-deductible donation to the CF Foundation today.

Thank you for all you do.
Sincerely,
Robert J. Beall, Ph.D.
President and CEO
Cystic Fibrosis Foundation
800-FIGHT-CF

So if you would like to donate, click here and make a donation today to help get more/better drugs approved that will only help Lil' Chris and all CFers!

***********************************************************
So, I was a little down in the dumps tonight knowing that I have a fundraiser at CiCi's this Thurs and no one from Kohl's has signed up yet(that means no $500), plus I am turning 29 tomorrow;( I was sad untillllll I looked at my Great Strides page and saw that my fundraisers are showing up now!! YEA!! So Friendly's brought in $113.78 from the receipts plus the $210 from donations and raffle which makes a total of $323.78!!! YEA!!! CiCi's Pizza brought in $42.21 in receipts(more than what I thought) plus $75 from donations and raffle plus $500 from Kohl's which makes a total of $617.21!! YEA!!!

As you can see, donations to my Great Strides page makes me very HAPPY!! :) So if you would like to brighten my birthday, you can just make a donation:) That simple;) I figured out that if every one of my blog followers and all my friends on Facebook all donated just $5.00, then that would raise almost $1,000!!!! Come on...you can do it....it's only $5.00!!!! ;-) Click here to donate!

Thanks in advance for making my last birthday in the twenties a GREAT one!!! ;)
M
PS. Join us this Thursday from 4pm-8pm at CiCi's Pizza in Wooster and 10% of your receipt will go towards a CURE for Cystic Fibrosis!!!

Top 9 of 2009 and Top 10 for 2010!!! Try it:)

Top 9 of 2009 that God has blessed us with...

1. Lil' Chris and another GREAT "HEALTHY" year!!!!

2. The quick and painless birth of my baby girl....Ayla Christi, who was born without Cystic Fibrosis:) YEA!!

3. The love from all my bloggy buddies the whole year through;) Thank you guys;-)

4. Lil' Chris getting potty trained(at least during the day;) and NO MORE BINKY!! YEA!!

5. Our wonderful house and cars with no breakdowns or accidents:)

6. Our jobs and our health.

7. All the fun things we got to do this year...Cedar Point twice, Geauga Lake, NJ Boardwalk, Maine, Camping, and of course Kalahari:) Lil' Chris loved every bit of them all;-)

8. Reconnecting with family and friends on Facebook:)

9. Raised $4,440 to help find a CURE for Cystic Fibrosis for my son and all CFers!

Top 10 for 2010 that I'd like to achieve...

1. Another "healthy" year for Lil' Chris with no nebulizers again.

2. No hospital stays or emergency visits.

3. Lil' Chris to swallow him enzymes all by himself without applesauce.

4. Lil' Chris to get potty trained at nap time and night time.

5. Lil' Chris to start using his big boy bed.

6. Ayla to get potty trained too;-) That would be nice...NO More Diapers EVER!!! :)

7. All of us to stay as healthy as possible.

8. For my husband or I to move up in our jobs or find better paying ones:)

9. To raise $5,000 or more for a CURE for Cystic Fibrosis!!!

10. And of course.......Go to DISNEY WORLD!!! YEA!!!

I think you should do the same that I did above! Give it a whirl! Then at the end of 2010 you can look back and see what you DID get accomplished from your list of "things to achieve";-) Have Fun:)

I hope everyone has a Happy, Safe, and HEALTHY 2010!!!

M

PS. Christmas pics are still being edited...coming soon;)

Encouraging Email from Robert Beall/Great Strides for 2010

Here is another encouraging email I got from the President and CEO of the Cystic Fibrosis Foundation(we were fortunate enough to meet him last week at our Volunteer Appreciation meeting. I will blog about what I learned from him soon;)....

Dear Friend,

Thank you for your generous past support of the Cystic Fibrosis Foundation. With your help, we are making remarkable strides toward a cure.

Despite the economic uncertainty of the past 12 months, 2009 was a banner year in terms of scientific progress for people with CF.

We achieved important advancements in:

1. Clinical testing of breakthrough new therapies designed to treat the basic defect in CF



2. Development of therapies aimed at treating the symptoms of CF, including new antibiotics and anti-inflammatory drugs



3. Quality improvement at our care centers nationwide, through the Foundation’s award-winning quality improvement program.
   

Thanks to your help, the median age of survival has risen to more than 37 years, more than double what it was 25 years ago.

Our progress has been remarkable, but we still lose precious lives to this disease every day. With so much promising research on the horizon, we need your support now -- more than ever before.

Your tax-deductible donation will fund the life-saving research that is adding tomorrows every day.

Thank you for all that you do.

Sincerely,

Robert J. Beall, Ph.D.

President and CEO

Cystic Fibrosis Foundation

800-FIGHT-CF

Thank you all who donated the past 2 years in honor of Lil' Chris to help find a CURE for CF! As you can see, your money is being put to good use, but a CURE has not been found yet (although they did get a lot closer this past year;). I just found out that our walk for a CURE for CF for 2010 is going to be on May 1st at 9am. Please click here to sign up to walk with us, or to donate to FIND A CURE FOR CYSTIC FIBROSIS for Lil' Chris and ALL people with CF! We raised $4,440 in 2009, so my team goal for 2010 is $5,000 and my own personal goal is $4,000. Now who is going to be my first donor for 2010???? ;-)

Thanks,

M

PS. If anybody has any fundraising ideas for me, please let me know!!

'09 Great Strides Results/Research for a CURE/Become a CF Advocate

I got word from Erica that our 1st annual Great Strides Walk in our town this past June raised $7,400!!! Not bad for our first year. Our goal was originally $5,000, but we upped it to $10,000. We didn't quite make it this year, but hopefully next year we will. Lil' Chris' team raised $4,440!!! Woo Hoo!!! We more than doubled what we raised last year!!! YEA!!!

THANK YOU EVERYONE WHO DONATED IN HONOR OF LIL' CHRIS! WE GREATLY APPRECIATE EVERY CENT!! There are over 30 drugs in the pipeline right now and 2 are really close to being released. Hopefully one of these will be the CURE!!

Here is an email about the progress of research for a CURE...

Dear Lil' Chris' Mom,

Every year, we commit millions of dollars to CF research and the search for a cure. With your support, CF Foundation-sponsored scientists continue to break new ground.

Our biotech collaborator PTC Pharmaceuticals just announced their potential CF drug ataluren, which has shown promising results in earlier clinical trials, has moved into Phase 3 testing.

CF patients who took ataluren (formerly PTC 124) in Phase 2 clinical trials showed improved lung function and decreased cough. The results suggest the drug improves the function of the faulty CFTR protein in people with CF – the underlying cause of the disease. Phase 3 trials will further evaluate the effectiveness and long-term safety of this potential therapy.

Your contributions allow us to invest in high impact research that is bringing us closer to a cure.

If you have CF, you can help by participating in the clinical trial. Visit the Foundation’s Web site to learn about this study and find out how to get involved.
Thank you for your commitment to the fight against CF. Together, we are making a difference!

Sincerely,
Robert J. Beall, Ph.D.
President and CEO
Cystic Fibrosis Foundation
800-FIGHT-CF


Thanks again everyone for donating. As you can see, your money is being put to good use. One other way that you can help that doesn't cost anything but a few minutes of your time is.....to become a "CF Advocate"! Click here and then click "Sign Up" to receive the CF advocacy Newsletter and Alerts, and then click on "Take Action Now". Then under US Congress, click on: Action for October: Ask your Senator to support expended access to clinical trials, fill in the blanks and hit SEND.Your Senators and House members for your state will receive your email and will know that they need your support and that you need them to TAKE ACTION NOW in Washington. Please feel free to add a little story about Lil' Chris, but you don't have to. The words are already there for you. You just have to send it to get the awareness out there to those who can make a difference in the CF community. **Please try to never write or say CF~ always use Cystic Fibrosis as some may not be aware of what CF is.**

I have recently become a Network Advocate for CF and I am LOVING the difference I am making with my emails to our Senators. I got a GREAT response the other day from Senator Sherrod Brown saying that he is going to be a co-sponsor...

Dear M:

Thank you for getting in touch with me about access to clinical trials.

I agree that individuals with rare diseases should not be denied eligibility for the Supplemental Security (SSI) program based on the stipend they receive for participating in a clinical trial. Our nation should be encouraging greater participation in these trials, not penalizing those who participate.

Senator Wyden has introduced legislation to exclude rare disease clinical trial stipends from SSI income calculations. His bill, the Improving Access to Clinical Trials Act (S. 1674), was introduced in the Senate on September 15, 2009 and referred to the Committee on Finance. I am proud to be a co-sponsor of this important legislation.

Thanks again for getting in touch with me on this issue.

Sincerely,

Sherrod Brown
United States Senator

You can make a difference too! Become a CF advocate today!!

M

CF Study and CF Article

I have SOOOOO much I want to blog about, but no time to do it:( Too much to do! Can anybody clone me? =) LOL

Anyways, click here for another great article about how we are getting closer and closer to a CURE for Cystic Fibrosis!!! Gotta love science and researchers!!! =)

If you would like to be a part of finding that CURE, just click here and make a donation today;)

A few days ago I helped by doing a CF study on-line. It was for 3 days, not all day long or anything. I could get on whenever I wanted. All I had to do was answer some questions and then respond to others answers if I wanted to. There were only about 12-18 questions each day. Most of the questions regarded finances and insurance for CF. There were probably about 20 other CF moms doing the study. It was really neat to compare answers and see how different it is for everyone in all the different states.

It seemed as though insurance is different for everyone, shocker there;-) Some cover WAY more than others. I feel bad for those who sometimes have to skip taking their meds, b/c they don't have the money to order more. That was what surprised me the most!

Another main topic was... what are some expenses for CFers? We pretty much all said FOOD!!! So you know, we didn't see each others answers before we answered the questions. I don't even think the moderator was looking for that type of answer, but we all gave it. The high calorie food that we have to buy can get very expensive. For us right now, we spend about $130 every 2 weeks just for Lil' Chris in high calorie foods!!! It is mainly b/c we have to experiment with lots of different foods to see what he'll eat and what he won't eat. I think we spend about $20 on ourselves, and then we just eat what Lil' Chris refuses to eat. Which is probably the reason why I haven't been losing much weight lately...too much high calorie foods;( Good for Lil' Chris....BAD for Mommy and Daddy:( I hate to waste food though, and money. Good thing I've been running my 5 minutes everyday to burn off those extra calories that my body isn't used to;-)

They asked other questions like what meds, what treatments, basically what all do you have to do or not do extra b/c of CF? One thing that I mentioned was that CF is a part of every second of our lives. When we go out shopping, when we go on vacation...we have to dodge every person who coughs or sneezes or blows their nose. We sometimes have to wait in the car for 5 or 10 minutes before going into a store, b/c someone is standing right by the doors smoking. We have to wait for them to finish and then wait for the air to clear before getting out of the car. It stinks, but it is just something that we do without thinking b/c we love Lil' Chris and want to protect his lungs.

Anyways, a bunch of other CF moms agreed with me. Some said they agreed 100%, others said they agree 120%! So I guess we are not the only ones that play the dodge game;-) lol

To sum up the study, it was very interesting, a lot of fun, and I learned a lot and I hope others learned something from me;) I can't wait to do another CF study to get us one step closer to a CURE!!
M

Getting Closer to a CURE/Update/Vest Pics

Lil' Chris is still doing GREAT!! His daddy on the other hand...not so great:( He may have gotten what Lil' Chris had a couple of weeks ago...fever and all:( I never did get the results from Lil' Chris tests, so still not sure what it was that he had. I've tried to call the dr.'s a couple of times, but it has always been at the wrong time. I'll try again Monday. Please pray that Ayla and I don't catch it too...also that Lil' Chris doesn't catch it AGAIN!

We had a busy summer! 3 very long car rides! 2 to NJ and one this past weekend to Maine! We had a BLAST each time! Good thing our kids are like us and don't mind long car rides;-) Our trip to Maine took 17 hours in the pouring rain to get there and 15 hours on the way back! It was long, but the kids did GREAT!! Thanks mom for the DVD player for the car! They helped A LOT!! Not sure how we got along without it before;-) Thanks to all our Maine relatives that put up with us, we had a lot of fun!! The pictures are uploading now, so they will be coming soon;-) Here are some pics of Lil' Chris helping me pack up his Vest for the trip:) He liked sitting in it before I put the Vest machine in:) Then he tried to pick it up when it was all ready to go! It weighs more than he does, but it was cute watching him try to pick it up;-) He's such a BIG helper!!

Photo and video editing at www.OneTrueMedia.com

I got this GREAT email about a promising drug that I've talked about before. Well, we are getting closer and closer to getting it approved by the FDA!! This could be HUGE for CFers!! Here is the email I got and you can read more about it by clicking on the links highlighted in red....

Dear Lil' Chris' Mom,

We’ve reached an exciting milestone in the search for a cure.
One of our most promising potential therapies, VX-770, is moving forward in clinical trials.

This compound has the potential to be one of the first drugs ever to treat the basic genetic defect in cystic fibrosis.
VX-770 (developed by Vertex Pharmaceuticals) is already being tested in adults. This week, for the first time, Vertex initiated a clinical trial in patients aged 6 to 11. Once the studies are complete, the FDA will determine if VX-770 is safe, effective and acceptable for approval.

To find out more about VX-770, read the full story and our FAQs. You can also read a very exciting article in today's Xconomy, quoting CF researcher Bonnie Ramsey and highlighting the work of the Cystic Fibrosis Foundation.

This milestone would not be possible without your support, and we need your help – now more than ever – to make this drug a reality.

If you have CF, you can help by participating in the clinical trial. Learn more by calling the Vertex clinical trials hotline at (877) 634-8789.

You can also help support this and other lifesaving research by making a donation today.

Together we can make CF stand for "cure found."
Thank you for your support,

Robert J. Beall, Ph.D.
President and CEO
Cystic Fibrosis Foundation
800-FIGHT-CF
info@cff.org
www.cff.org

Isn't that awesome?!? Thank you EVERYONE who has donated to help find a CURE!! Your money is being put to good use! We are getting closer and closer to a CURE!

If you haven't donated yet and would like to, click here to help us get to a CURE! My personal goal is to raise $5,000 by the end of August. So far we are at $3,907.63!!! Please tell your family and friends and pass the word along to donate to help find a CURE for ALL CFers!! I think today I will send out my last email reminders for this year about donating. I encourage all CF bloggers to send their reminders one last time too. PLEASE, PLEASE, PLEASE DONATE TODAY!!

TOGETHER WE CAN MAKE CF STAND FOR CURE FOUND!!!!!!!!
Thanks,
M

1st Annual Great Strides Walk

Our first annual Great Strides Walk was this past Saturday and it went GREAT!!! It was a BEAUTIFUL day!! Not too hot...it was just right:)

Overall, our walk raised over $7,000!! Originally our Great Strides Event Planner, Erica, wanted us to set our goal at $5,000, but we said we could do $10,000! Well, we almost made it:) We still have until the end of Summer to collect money, so hopefully we will still hit our goal of $10,000! I think we will;-)

My team alone will have raised over $4,000 once I collect the pin-up money!! That's including $1,500 in grants from Kohl's from doing 2 CiCi fundraisers, and then we had 8 associates from Kohl's at our walk($500 for each event)! Plus, we hopefully will be bringing in more money from our professional photographer that was at our walk. He is with Federal Photo and he took LOTS of pics and has them on-line for people to order them. 100% of ALL orders from our walk pics will go towards a CURE for CF!!! Isn't that AWESOME...100%!!!!! He did a FANTASTIC JOB!! THANKS JEFF:-) If you would like to see the pics and order some, go to www.federalphoto.com.

My sister D drove 8 hours to come to our walk with her 3 kids...what a trooper and a great sis:) We had SO much fun when they were here, but now they are gone and we miss them:( But tonight my husbands sister and family is driving 8 hours to come visit us! They should be here really soon:)

Thanks again everyone who donated to help find a CURE for CF! My family GREATLY appreciates every cent;-) And THANKS to my team for walking for Lil' Chris...Barb N, Karen T, Kaitlyn, Stacie, Deb F, Katee R, Missy, Sean, D, C, E, R, Jeff. Thank you to Lil' Chris' old babysitter, Deb, who put a team of 4 together;-) She was the first person to actually put a team together for us:) Thanks Deb:) Lisa who contacted me through email b/c she saw my commercial also came with her hubby. Her step brother passed away from CF:( Thanks for coming Lisa and for donating:) So altogether, my team had about 18 people!! Pretty good for our first walk in Woo!! I'm not exactly sure how many people were there overall. It looked like about 50-75 maybe. There were a lot of kids which was great! The balloon guy was awesome! The kids had a blast with all his balloon animals! Pat Catan's(craft store) was there doing crafts with the kids which was great! The kids got to make visors to wear:)

There were only 3 things that didn't go exactly to plan...the fire truck and 5 pizza's from Papa John's never showed, and the Coromega samples didn't come in time. I think the fire truck wasn't there, b/c they said that they are on call so if there was an emergency they wouldn't be able to make it. In the beginning of the walk an ambulance went by with it's lights and siren on, so I'm guessing that the fire truck was headed in the same direction. But that's ok, we still had a great time without them all:)

Here are some pics of our 65 Rose Garden that a lot of my readers were curious about. Thank you to all my Rose Sponsors! You guys truly are amazing for helping out Lil' Chris with your VERY generous donation:) I think my team was the only team that had any Rose sponsors, so thank you again SOOOOO very much to .... my cousin Rob & Family, Al & Nancy, Christi & Dustin, my OBGYN(who was the first to utter the words Cystic Fibrosis to us), my Dad, and to all the stores who did pin-ups for us...3 CiCi's Pizza locations, Wooster AT&T, and of course Kohl's for 3 $500 grants;-)

Make an on-line slide show at www.OneTrueMedia.com

I'll have the rest of the walk pics soon;-)

M