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Friday, June 29, 2012

Learning About CF & New Drugs for DDF508 & 2 new local CF families

I got some great news and some not so great news...

The great news is that a Phase 2 clinical trial of Kalydeco in combination with VX-809 showed significant improvements in lung function in people with the most common CF mutation(Delta F508), which Lil' Chris is a double Delta F508!! This is it people!!! This could be our answers to pray!!


If you remember me talking about Kalydeco only working for those with mutations G551D which is only 4% of the population, well VX-809 is what helps the DF508's, so with the combination of them both...the possibilities are hopeful!!! :-)

Here is a video that a fellow CF mom put together to help us all understand what these 2 drugs really do...(note, VX-770 is what Kalydeco used to be called)...



Below is what the CF Foundation posted yesterday about this trial...(click here to learn more)


June 28, 2012
A Phase 2 clinical trial of Kalydeco™ in combination with VX-809 showed significant improvements in lung function in people with the most common CF mutation, according to final results announced today by Vertex Pharmaceuticals Inc.
Both Kalydeco and VX-809, a CF drug in development, are designed to treat the root cause of cystic fibrosis. Vertex developed Kalydeco and VX-809 with significant financial, clinical and scientific support from the Cystic Fibrosis Foundation.
The 56-day study enrolled 109 people, ages 18 and older, with one or two copies of Delta F508. People in the study with two copies of Delta F508 (the most common CF mutation) who received the highest dose of VX-809 combined with Kalydeco showed the greatest improvement in lung function. Vertex released preliminary results from the Phase 2 trial earlier this year.
Based on these final results, Vertex plans to begin a pivotal trial of the combination treatment in people with two copies of Delta F508 in early 2013. Pivotal trials typically aim to gather data that the U.S. Food and Drug Administration (FDA) could use to decide whether to approve a potential drug.
“The improvements seen in lung function are very encouraging, and we are pleased that Vertex plans to move forward quickly with a pivotal trial,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation. “We still have significant work ahead of us, but the entire CF community can take pride in its role in making this important step possible. We thank the trial volunteers and their families, clinicians and scientists, and our dedicated volunteers and donors across the country.”  
Participants with one copy of the Delta F508 mutation also showed improvements in lung function, compared with those who received a placebo — though smaller than the improvements seen in those with two copies of Delta F508. Vertex said it plans to conduct additional studies of Kalydeco and VX-809 in those with one copy of Delta F508.
About 50 percent of people with CF in the United States have two copies of the Delta F508 mutation; an additional 40 percent of people in the United States have one copy.
The FDA approved Kalydeco in January 2012 for people with the G551D mutation of CF ages 6 and older. About 4 percent of people in the United States have the G551D mutation.
People with CF and their families who have questions about the Phase 2 results can contact Vertex Medical Information at 1-877-634-8789.

Isn't that GREAT news!?!


Now for the not so great news... I recently found out that there are 2 more kids that have gotten diagnosed with CF in our area:'(

One is a cute lil' 9 year old boy. I first found out about him through The Faithful Little Cupcake facebook page. They posted a pic of him doing his Vest while eating one of their yummy cupcakes. So of course I asked if he had CF once I saw the Vest, and of course asked...does he live in Wooster? Then just a coincidence that my friend Stacy A. with Broncheictasis (a lung disease similar to CF) was at a pool party and found out that there was a child there with CF. She of course then talked to his mom and let her know that she could not be near him since she has cultured Pseudomonas. She told his mom about me and surprisingly she already knew about me! She called me "The Famous Michelle who does the CF walk" or something like that :) LOL!! So she requested to be my friend on Facebook and I'm so glad so I can help her out :) Come to find out, she is the same mom from the Faithful Little Cupcake page! Small world:)


The other one is a little girl who was born a couple of months ago. Her sister was in Lil' Chris' preschool. When she was born, they thought there was a mix up with the results b/c the parents aren't CF carriers. The sweat test came back positive though and they are starting treatment today. The parents are going to get re-tested. A girl I used to work with and used to babysit for us, Michelle V., was the one who told me she has CF and recommended I be her friend on facebook. I had no clue who it was until I went to her page on facebook. Since school let out, I've been wondering if she ever got the sweat test done and what the results were. I'm glad Michelle put us together so I can help them out the best that I can.We started Lil' Chris' treatments at just 2 weeks old, so I know what it's like to try to feed an infant with CF and do manual CPT.


I wish these families all the best and I promise I will not let up on finding a CURE!!! I do all this fundraising not just for Lil' Chris, but for ALL current CF families and ALL future CF families!!! WE WILL MAKE CF STAND FOR CURE FOUND!!!


BTW, all my local CF moms who are probably panicking right now...the little boy above is home schooled :) For those who don't know, schooling is so hard for CFers. It was a big decision for us with Lil' Chris. CFers can't be near each other, b/c of cross-contamination, they could spread the bacteria's in their lungs to each other. A nonCFer can't catch it, but to someone who has another lung disease it can be very dangerous. For example, you don't want an older CFer around a younger CFer in fear that the younger one would catch the bad bacterias that the older one has accumulated over the years. 

For Lil' Chris, we had to make a big decision b/c the local public schools had CFers at each one and the one school that didn't...well, it's very old and full of mold which is not good either for a child with a lung disease. So we decided to send him to the local Christian School. Honestly, I'm glad, b/c I've always wanted my kids to go to a Christian school, b/c I loved going to a Christian school as a kid and I don't think I would be the same Christian I am today if I didn't. There are no CFers at this school, but the sister of this newly diagnosed baby girl will be going there. She will be in the all day Kindergarten and Lil' Chris will be in the half day Kindergarten, so next year they will probably be in the same class. We thought we would start him out slow, plus it means one more year of possible less germs to catch, oh and we totally fell in love with this teacher! She knows some friends with CF, so she is aware of how being germs cautious if very important. Anyway, even though they will be in different classes this year, we will still have to be careful that our 2 CFers don't get too close. They say 3 feet is ok, but I've just tried to always keep him far away from any CFer to be safe. So we'll just have to be extra cautious if we go to field trips together or something.


We got back his last throat culture results and it was the same as usual...Staphylococcus areus sensitive to Oxycillen(MSSA). No changes in treatment. YEA for no bad bacterias!!! WOOHOO!! 

Here is a pic of Lil' Chris doing his Vest and holding a pic of his buddy, Spencer, who is serving in the Army right now and was in the Daily Record Newspaper the other day:) GO SPENCER!!


Please continue to pray for good culture results and good lung function and please keep the above new CF families in prayer. They are going to need the strength! Also, don't forget about Phennyman, he is in need of surgery. Lil' Chris' cousin Nathan with Leukemia is visiting from NJ right now and he is doing GREAT!! Praise the Lord!! Thanks so much for all your prayers!
M

Wednesday, June 20, 2012

Raised $720 at CiCi's Pizza Tonight for CF!! YEA!!

We had another successful fundraiser for Cystic Fibrosis tonight at CiCi's Pizza!! We raised $720 total!! Woo Hoo!!! 
I designed the sign above and got them made at Staples and put them up around town. They didn't turn out too bad, but next time I need to make bigger ones:) I only had one person, my neighbor John, say he saw the sign and that's how he knew to come. It was a pretty busy tonight, but I'm not sure if it was b/c the sings or not. Maybe I'll put them at different intersections next time :)
The above pic is of Lil' Chris and Ayla helping me pick up the last sign at the end of the night. Believe or not, this was at 9pm and it was still light out! I LOVE SUMMER!!!

Congrats to Sean Conway for winning the 2 Indians Tickets!! Have fun at the game and thank you again for your donation for A Cure 4 Lil' Chris and ALL who suffer from Cystic Fibrosis!!


BIG THANK YOU to my AWESOME Kohl's girls for helping out and helping us get the $500 grant from Kohl's. That makes $2,500 now that Kohl's has donated!! Isn't Kohl's the BEST!?!
THANK YOU
Jill P.
Laura T.
Esther H.
Jolleen


Thank you to my AWESOME neighbors John and Kenadie, Lori A. from work, and Oma and Opa for coming out to support us!!


Also, thank you to Aunt Steph, Uncle Greg, Tyler, Nathan, and Lincoln for coming all the way from NJ just for this fundraiser....just kidding, they are in town for a couple of weeks ;-) LOL


A HUGE THANK YOU to ALL who donated!! Every penny is so vital in funding the MUCH needed research for better meds and hopefully a CURE in Lil' Chris' lifetime!!


Thanks,
M
PS. Please continue to keep Lil' Chris in your prayers :)

CiCi's Pizza CF Fundraiser Tonight 5-8p!!

Join us tonight, Wed June 20th, 
at the Wooster CiCi's Pizza between 5-8p for  
A Cure 4 Lil' Chris 
and ALL who suffer from Cystic Fibrosis!! There will be face painting for the kids and 
a raffle of 2 Indians tickets game of your choice!!! 

Hope to see you there!!

Sunday, June 10, 2012

3rd Annual Great Strides Walk for CF





We had an AMAZING day for our Great Strides walk for a CURE for Cystic Fibrosis!! It was wonderful to see all the support from so many people! THANK YOU TO EVERYONE WHO HAS DONATED, RAISED MONEY, SPONSORED THE WALK, DONATED PRIZES FOR THE WALK, OR CAME AND WALKED WITH US!!! IT MEANS THE WORLD TO US!!

This year was our 3rd annual walk and it was Lil' Chris' first time going. In the past, he stayed home with a sitter since there is a risk of cross-contamination between him and the other lil' CFers. This year we decided to let him go since he is getting older now and we promoted the walk and raised money at his preschool. He was soooo excited when his buddy Kyle from his class came!! Lil' Chris and Kyle played under a tent a little bit away from the pavilion. I just couldn't take Lil' Chris and be able to do all I had to do AND worry about him getting too close to the other CF kids, so we bought the tent and my hubby put it up! Thanks Honey!! It was a little tricky trying to go back and forth between the tent and pavilion, but it was worth it! Kept my mind at ease:) We still have not gotten his last throat culture result back yet. I'll have to call Monday.


We were soooo THANKFUL that Panera Bread supplied the yummy bagels! I LOVE Panera!! BIG THANK YOU to Domino's and McDonald's too!! The pizza's and happy meals were a big hit!!! The fruit from Buehler's went pretty quick too:)


David L. was a hit with the AWESOME balloon animals he made for the kids!! Thanks David!! 

There were also CF frisbee's for the kids and CF tattoo's(I accidentally put Lil' Chris' on upside down LOL;). Pat Catan's didn't make it there(I totally forgot to call and confirm with them...oops), but the fire truck did!! They had to leave for about 10 minutes for a call, but fortunately it wasn't anything serious and they were able to come back. Lil' Chris LOVED exploring the big "Fire Red" as he calls it:) LOL
We had a new director this year, although she has been with the chapter for a while, this was her first walk that she ran. She did a GREAT JOB!! She also has a son with CF, so she knows how important these walks are to the CF world. THANK YOU KATHY FOR ALL YOUR HELP!!!
BIG THANK YOU again to Sprint Preferred Wireless for your huge sponsorship and towels for all the walkers!! Loved your big signs! We took our group pic in front of them:)

Thank you Wayne Savings Bank for your Rose Sponsorship!! It was so nice seeing your sign up in the garden of roses:)


Thank you Speedway for donating the ice!! It was nice having cold drinks on such a hot day!!


Thank you to my Kohl's peeps for coming and supporting Lil' Chris and CF!! Kohl's so far has donated $2,000!! Gotta LOVE Kohl's!! :)
Thank You to...
Tiffany M.
Barb N.
Rebecca G.
Steph W. & Family
Amanda P. & Quincy

I can't say THANK YOU enough to all my friends, family, co-workers, neighbors, and even complete strangers for donating to help us find a CURE for Cystic Fibrosis for Lil' Chris and ALL who suffer from CF!!! Our walk raised over $16,000!!! That's AWESOME!!

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

Saturday, June 9, 2012

Great Strides Walk is TODAY!!!

Can't wait to see everyone at our walk today, June 9th!! Meet us behind Ida Sue School at 9am for some Panera Bread bagels and cream cheese, fruit from Buehler's, cookies, Coffee, various drinks chilled by ice from Speedway, Domino's Pizza, McDonald's happy meals, and bags of chips from  Frito Lay.


There will also be a craft table from Pat Catan's, a Wooster fire truck(if no accidents or fires that morning), balloon animals, and more games and lots of prizes!!

Thank you to Stacy A. and Amy for donating a ton of Bath & Body Works baskets!! They look AWESOME!!! 

Thank you to my friend, Christi, for donating beautiful rose earrings that she made to sell at the walk to raise money for CF!!  They are only $5!!


Thank you to my neighbors Sean and Michelle for donating a Coke basket and a Bath & Body Works basket for the walk!! Someone is going to be pretty happy when they win those!!

Big thank you to another neighbor, Meg, for donating a basket for a newborn shoot with her company Meg Bowman Photography!! She takes some pretty AWESOME pics too!!! The basket is about a $150 worth!!


A HUGE THANK YOU to Kevin for getting Sprint Preferred Wireless to be our $300 sponsor and for the Sprint goody bags to give away to each walker!! THAT'S AWESOME!!!


Big THANK YOU  to my Kohl's associates for volunteering to help out so that we get ANOTHER $500 grant from Kohl's!! That will make $2,000 so far from Kohl's this year alone!!! WOO HOO!! Our goal is $5,000, we CAN do it!!


THANK YOU SO MUCH FROM THE BOTTOM OF MY HEART TO ALL OF THESE WONDERFUL COMPANIES AND FRIENDS THAT HAVE DONATED TO MAKE THIS WALK A SUCCESS!!! Without you, we wouldn't have a walk that raises thousands of dollars for such a GREAT cause of finding a CURE for CYSTIC FIBROSIS!!

M
PS. Click on any blue links above to learn more about those companies. Each one that donated was from the Wooster area.

It's not too late to donate. Click on the Great Strides link at the top of this blog on the right!!

Saturday, June 2, 2012

One Week til our CF Walk!!!

There are sooooo many things I want to write about and pics and videos to post, but I just don't have the time right now. Our Great Strides Walk for Cystic Fibrosis is in ONE WEEK from today!!! I can't wait!! Then I will have time to post all that I want to post...hopefully:)

My goal is $7,000 and so far I am at about $4,200. I'm still waiting on 2 $500 grants from Kohl's for the 2 CiCi's events I recently did, and still waiting on the percentage from the receipt from those nights too.

I have some more CiCi's events lined up for the up coming months... the next one is on Wed June 20th from 5-8p at the Wooster's CiCi's Pizza!! The raffle will be 2 Indians Tickets again!!

My last CiCi's fundraiser we raised another $730!!! Congrats to Lisa B from Kohl's who won the 2 Indians tickets!!

BIG THANKS TO MY Kohl's girls as always for helping us get the $500 grant!!!

Our neighborhood goal is $500 and so far we are at $400!! Woo Hoo!! Almost there!! Can we hit $500 by Sat?? :)

If you would like to sign up to walk next Sat or to sponsor me for walking, click here!

BIG THANKS to my last 2 donors...Agnes K.(one of my FAV CF moms:), and Jason M(yes, I have the BEST DM EVER!!!)

Thanks so much to all who have donated so far!!
M