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Saturday, February 27, 2010

CiCi's Pizza Fundraiser Results

Thank you everyone for the birthday wishes a few days ago:) Unfortunately I woke up with a cold on my birthday:( Ughhhh! Ayla ended up getting it on the 25th and today Lil' Chris' nose has been running;( I wore my hospital mask around him, but he probably got it from Ayla. It's hard to keep them 2 apart;) Oh well, he can't go forever without getting a cold. He has done so well this winter! This is his first cold in a long time, so I can't complain. He still has a dry cough every now and then. It mainly shows up when he is crying...not sure if he is making himself do it though, so he doesn't have to do what he is asked to do or so he doesn't get in trouble for doing something bad...if you know what I mean;-) lol I'm keeping my eye on him though. Our next clinic appt is on March 31st.

On the 25th, I had another fundraiser at CiCi's Pizza from 4pm-8pm and it was a huge success!! I was able to get the 4 other Kohl's associates, so that means we will get the $500 grant from Kohl's! YEA!! Plus we got $150 in tips, donations, and raffle money!! It was pretty busy, even though it was snowing and the wind was just whipping around out there. I won't find out what we raised in the 10% of every ones bills for another couple of weeks. I'm guessing it's around $100. So if it is $100, then that brings the total to $750!! YEA!! I think I probably could have raised more, but I was sooooo sick that night. My nose just kept running and running. Luckily I have my clip on sanitizer;) It definitely came in handy that night! I tried to keep what I said to the customers short so my nose wouldn't run in front of them. Sad isn't it? But I would do it again for my Lil' Chris;-) He's worth it all!!

Our next fundraiser is on Tues March 9th all day long at Tumbleweed Restaurant. They will donate 10% of your bill IF you present the fundraiser coupon. Hopefully this time it won't be a blizzard like last time on Feb 9th! We only raised $8.80 that time. Which basically was just from my husband and I eating lunch and dinner and dessert there. Chris convinced the guy who worked with him that night to eat there too, so that was cool:) Plus when I went there to pick up my lunch, I gave a coupon to a table that had 3 customers;) Tumbleweed will never know;-) lol That is unless they read this blog;-) LOL :) Oh well, we got 2 feet of snow that day!!

Our next CiCi's fundraiser is on Thurs March 25th from 4pm-8pm. Come join us in the fun! We will be raffling off a basket full of Bath and Body Works products thanks to Stacy A. and Amy P. :) Thanks again girls!! The customer who won the basket the other night was Tina!! Congrats Tina!! Luckily she was coming to Kohl's the next day, so she just picked up her prize there;) It's so nice that Kohl's and CiCi's are right next to each other:)

So I didn't get anyone to donate $5 on my birthday, but Wayne Savings Community Bank donated $125 and is now my first "Single Rose Sponsor"!!! YEA!! Plus they are going to do Jeans 4 Genes too!! YEA!! I'm so excited!! Thank you Jeanette for spreading the word about Cystic Fibrosis and for getting the sponsorship!! You're AWESOME!! Tell your co-workers I said "Thank You for doing the Jeans 4 Genes for CF!!" Getting this news on my birthday just made my day:)

Also, "Thank You to Barb N." from work for your online donation!!! Thanks for always supporting Lil' Chris:) You're the best!!

My new total that I have raised that is showing up on my Great Strides page right now, is $1890.99!! Then if we add the $8.80 and the $750, that gives us $2649.79!! YEA!! My overall goal is $5000, so we are half way there;-) YEA!! 4 fundraisers down, 4 more to go!! I can't wait for our walk on May 1st!!

Lastly, Oma(my MIL) left today;( She was here for 2 weeks and it was GREAT!! She definitely spoiled me...I didn't have to touch the dishes, the laundry, the cooking, or the kids;) LOL
THANK YOU, OMA!! YOU'RE THE BEST!!
I hope you all have a GREAT day!!
M
PS. Pics to come of our time with Oma!!

Tuesday, February 23, 2010

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!!!

Friday, February 19, 2010

Ayla's Dedication/Lil' Chris' 2nd Birthday Party Video




Here is the video I have been promising for a while now:) I can't believe how small Ayla was in this video!! This was taken last Summer...Lil' Chris was turning 2 and Ayla was about 6 months old. This video is of her dedication and then their Dedication/Lil' Chris' Birthday Party.

Special thank you to Oma and Aunt Steph for throwing the best party ever:) Also, thank you everyone who attended the dedication and party! We had a blast!! It was so nice catching up with family and friends I haven't seen in years:)

I hope you enjoy:)
M

Wednesday, February 17, 2010

Christmas 2010 Montage/Update/Pray for Eva M.

Sorry I haven't posted in a little while:( We have been having a blast! My sis-in-law and her family and my MIL and FIL all came to visit last Thursday and then left on Monday. My MIL is staying until the 27th to babysit for us since our babysitter went on a missions trip and our other babysitter is moving on the 26th. So...

"THANK YOU OMA FOR STAYING TO BABYSIT FOR US AND FOR ALL THE HELP AROUND THE HOUSE!!"

So, since I'm busy entertaining over the next couple of weeks...I thought I would post some pics that I haven't had a chance to post yet. Here is our Christmas 2010 montage...I like the video of Lil' Chris with the red tray we got him. He couldn't figure out what to do with it;-) Also, it's funny at the end when he made the motorcycle go all by himself:) THANK YOU OMA AND OPA FOR THE AWESOME MOTORCYCLE!!






Just for a quick update...

1. Lil' Chris has been coughing a lil' today...hopefully it goes away on it's own real quick! Please say a prayer for him.

2. Ayla's other tooth started coming in next to her right front tooth, and her molars are coming through!!! No wonder she has been fussy a little lately.

3. The last couple of weeks, Ayla has been standing on her own!!!

4. She can now push her little baby stroller all by herself!!!

5. She has also taken a step!!! YEA!!! :)

Now for some CF stuff... Please pray for Eva Markvoort. She is an adult CFer who desperately needs a second double lung transplant. She is in her last days unless a donor becomes available. Here is a video of her saying "goodbye"...some CFers or CF parents may not want to watch this...

Please Please Please become a donor today!!! So many lives depend on it!! Spread the word and you could save Eva's life, Lil' Chris' life, or any CFers life! A double lung transplant is a CFers last resort and it could add another 5-10 years onto their life if not more!


I'll post some old pics that I forgot about soon...like Ayla's dedication pics and Lil' Chris' birthday pics:)

I hope you have a GREAT day!!

M

PS. Please keep Eva in your prayers.

Wednesday, February 10, 2010

"Special Gift from God"


Something that I have learned along my journey with Lil' Chris, is that I am so much more capable than I ever thought I was. The Lord has really given me the strength to get through and to do certain things.


For instance...I went to an outing the other day with some fellow CF moms and we got to talking. One mom said that...well, I can't remember her exact words and I hope I don't get this wrong and offend anyone, but she implied something like she has a hard time doing fundraisers and such, b/c it brings up "things". I'm sure other CF moms out there know what I am talking about. We do our daily routines of enzymes, vitamins, Vest, and for most nebs, but that's what it becomes...a "routine". Then when we do fundraisers and have to talk about what's REALLY going on with our child/children...that's when it gets "real" again. We all get this from time to time where we come back to reality and go "Whoa, my kid really does have the horrible life threatening disease!"

So anyway, this CF mom tells me that she is a fan of my blog and knew who I was as soon as she saw me. I had never met her before and never knew she was a fan of my blog...it's nice to have fans;) I felt like such a celeb;-) LOL Anyways...she knows from my blog that I do a lot of fundraisers, so she asks me "How do you do it? It's hard for me, b/c it brings it back to reality for me."

I proceeded to tell her that it's hard for me too at times. Sometimes when I do my CiCi's events and I go around to all the tables and talk to all the guests about my son, and all he has to do, and his life expectancy is only 37... it gets to me and I start to tear up. That's usually when I try to walk away and those are the people who usually end up donating more. I don't do it on purpose, but sometimes when you are saying stuff and the people you are talking to look at their healthy kids sitting next to them...you can just see it in their eyes that they are thankful that their children don't have CF. That gets to me, b/c I WISH I could think the same. I WISH my son didn't have a life threatening disease. I WISH I didn't have to do ANY fundraising.....but I do, and I do it for my son and all CFers.

To get back to my point...For the most part, I can talk about CF to anyone at anytime and it not bother me. Sometimes people look at me like "Wow, how are you able to talk about it so freely like it's nothing?" Well, I surely don't think it's nothing, but for some reason I can. I think God gave me this special ability, b/c he knew I was going to have Lil' Chris someday. He knew that I was going to have to fund raise for his life. He knew that I could handle it. I never understood why I could talk about hard or sad things like it's nothing . . . until I had Lil' Chris.

Now don't get me wrong, I'm not saying that this is how all CF moms are or should be. This is just how God made me and He is using me to get the word out there about Cystic Fibrosis. It's through the strength of God that I can do it and am able to do it!

Just curious...any other CF moms or CFer's out there feel that they have this special ability too??
M

PS. We just got to 17,000 hits today!! Woo Hoo!! Thanks everyone who reads this blog and passes it along. I greatly appreciate it! BTW...Hi Melissa;-) LOL

Tuesday, February 9, 2010

Tumbleweed Fundraiser Today!!

Today is our first fundraiser at Tumbleweed Restaurant!! YEAAAA!! Wait....is it snowing again??? YES!!! Of course it is!! I'm having a fundraiser!! It always snows when I have a fundraiser!!

This is my 3rd fundraiser so far this year and it has snowed EVERY time!!! Today's snow is a lot worse than the other 2 fundraisers, so I'm not expecting much. A group of people from work were going to go have dinner, but then decided not to b/c of the snow. One girl gave me $10 and said "Here, I'm not going out in that snow!" I just laughed:) I can't blame anyone for not wanting to drive in this crazy snow. I didn't even want to, but I picked up my food "to go" on my way home from work today. While I was waiting for the girl to go get my food, I slipped one of the coupons to some people who were eating...LOL :) They'll never know;) LOL My hubby is working tonight and he is going to get dinner there tonight, so at least there will be 3 people who gave the coupon so 10% will go towards a cure:)

If it does stop snowing(doubtful since there is a snow advisory until 7pm tomorrow) and you would like a coupon to go to Tumbleweed... then click the link below...
Tumbleweed Coupon
Thank you to those who will risk your lives in this snow for Cystic Fibrosis!!
M
PS. I have added a new header pic and I added my Great Strides Video above the posts, so noone will miss it;-)

Wednesday, February 3, 2010

VX-809 Promising Results in Phase 2a Clinical Trials

I LOVE seeing good news about CF!! Today it has been posted all over facebook, email, other blogs, and news, that the VX-809 phase 2a clinical trials look very promising!! Click here to read about it on the CFF website.

Here is the email from Bob Beall:

Dear Friend,
This week, we gained important new ground in our work to advance the development of new cystic fibrosis treatments.

VX-809, a potential CF drug developed by Vertex Pharmaceuticals, showed encouraging results in a preliminary Phase 2a clinical trial. VX-809 is one of the first investigational drugs aimed at treating the underlying causes of CF.

The oral therapy was tested in patient volunteers who have the most common cystic fibrosis mutation, Delta F508. (This is what Lil' Chris has)

Results from the trial showed VX-809 was well-tolerated and, in a subset of CF patients, reduced sweat chloride levels — a key indicator of CF.

VX-809 is the direct result of one of the Foundation’s largest investments in drug development. This gives us confidence that our innovative approach to science leads to progress.

Without your support, this milestone would simply not be possible. Your contributions help us build hope for the future and continue to advance vital cystic fibrosis research.

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
info@cff.org
www.cff.org


Click here if you want to see my first post about VX-809. I think I put in this post that the VX-809 was a pill, but I'm pretty sure it is inhaled 3 or 4 times a day. The VX-770 is a pill.

They are going to do another clinical trial in the second half of 2010 and that will be combining the VX-809 and the VX-770 in patients with Delta F508 (Lil' Chris' genes) I believe. Keep praying that this is the CURE!! Keep fundraising or donating, b/c these clinical trials are not cheap!! The Cystic Fibrosis Foundation needs our help to keep the research going to get to a CURE that is so close right now!! Click this link to donate today...http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=6765&idUser=244059

Thank you all so much for all the money you have donated over the past 2 years!! As you can see, your money is being put to good use...we are getting closer and closer to a CURE!!!
Thanks again,
M

Monday, February 1, 2010

First Ever Great Strides Video!!

I finally made a Great Strides video for Lil' Chris!! Every year, I have seen everyone else make one, but I never did. I don't know if it was b/c I just never had the time, or if I just didn't want to type what I would have to type on the video. It makes me sick knowing that all us CF families not only have to deal with the stress of CF, but also have to raise the money to fund VITAL research to find a CURE and get better meds! Cystic Fibrosis is NOT governmentally funded like other diseases. It's up to US to make the difference in these children's lives! It's up to US to help them live a "normal" life! It's up to US to help them live longer!

Now do you understand why I do all my fundraising and always ask for your help in donating? We CAN make a difference!! We CAN help these kids live longer!! We CAN make CF stand for Cure Found!!

Please help by clicking here or by clicking on the Great Strides link on the upper right hand side of my blog, to donate today. Every penny counts! Thank you so much for all of your support over the last couple of years:)

Without further ado, here is my first Great Strides video...

Thank you SOOOOOO much for watching and for donating! Please spread the word!
Thanks,
M