CF Med List Expense/BCMH Approval!!!

GREAT NEWS!!!!!

WE GOT OUR APPROVAL LETTER IN THE MAIL FOR BCMH(Lil' Chris' secondary insurance)!!!! WHOO HOO!!!!!

It's a good thing too, b/c the same day we got his approval letter, we also got a statement in the mail saying that his $1,500 for 2 of his meds was paid for!! Praise the Lord!!!

I found this cool price list for most CF meds...https://www.cfservicespharmacy.com/ProductsandPrices/

Check it out to see how much you/your child's meds are without having to rummage thru all your bills and statements:)

Here is a breakdown of Lil' Chris' meds...

Enzymes=Creon 6,000= 5 with every meal, about 25 per day=$1,200 for 30 day supply

Prevacid=once daily=$250 for 30 day supply

Aquadeks=once daily=$42 for 30 day supply

Pulmozyme=inhaled once daily=$2,700 for 30 day supply

Albuterol Puffer= (was not listed)

Flonase=$102

When he cultures Pseudomonas, he has to take the following...

Cipro=$530 for 30 day supply

TOBI=twice daily for 28 days=$8,000 

TobiPodhaler=$8,000 (this just got approved, so he may take this next time he cultures Pseudomonas instead of TOBI, b/c it cuts treatment time down by about 40 minutes per day. I was surprised to see it costs the same as TOBI)

He also takes Claritin daily too, which is not listed b/c it's for his seasonal allergies. Not sure how much it is, but our insurance and BCMH covers that also thankfully. I think it's around $40.

So, our grand total for just one month without TOBI and Cipro=$4,334

Grand total with TOBI and Cipro=$12,864

Grand total for one YEAR without TOBI and Cipro=$52,008

Grand total for one year with TOBI and Cipro every other month=$103,188 

WOW!!! CYSTIC FIBROSIS IS EXPENSIVE!! 

SO THANKFUL FOR BCMH!!!

I don't know what we would do without it!!

THANK YOU BCMH and THANK YOU LORD FOR ANSWERED PRAYER!!!

My advice to other CF families is to get with your CF clinic's social worker to find out about any other financial assistance programs your area might have. BCMH is for my state, but your state may have something similar. Also, even if you think you may make too much and won't get approved...just apply anyways. It doesn't hurt anything by applying. You never know, you might get approved anyways, b/c of how serious a disease CF is! If you get denied one year, apply again each year. Like I said, it doesn't hurt to try...your effort will pay off once you get approved:)

Please pray that we continue to get approved each year as you can see the impact it has on our family.

Thanks,

M

PS. Lil' Chris is doing GREAT! NO COUGH!! THANK YOU JESUS!!

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!!

Pulmozyme Decision / New Prevacid Capsule

After much thought, research, and prayer, our decision is in about the Pulmozyme....kinda;) LOL

This past Monday, I had to call the CF clinic b/c they left me a voicemail that he could no longer get the Solutab Prevacid that he has been on for years. So, now he is on the capsule Prevacid. They are just like his enzymes except bigger and a different color. He takes one 15ml capsule each morning. He's such a trooper that he can take all 3 enzymes AND prevacid all at once with a drink!!!! If you look in the pic below, you can see the aqua color capsule next to his enzymes. I took this pic for his 2012 Great Strides Video(see at top of blog:) Won't you please donate today?? :)

Ok, back to that phone call... when I called the CF clinic, I asked for my fav nurse and I was sooooo glad she was there!!! After we got the Prevacid thing settled, I started asking her about the Pulmozyme. She told me all about it and gave me a website to look up with videos. Its just Pulmozyme.com. I looked it up and right away was very encouraged b/c I saw 3 fellow adult CFers that I knew...Ronnie and his wife Mandi Sharp from Run Sick Boy Run CF blog and who founded CysticLife.org...Emily Schaller the founder of Let's Rock CF and the "You Know" You Tube videos which are Ellen Degeneres-like shows about CF(they are AWESOME), and Isabel Stenzel Byrnes who has a twin sister with CF too and they wrote a book about CF called "The Power of Two" I can't wait to get my hands on it and read it, b/c those girls are Amazing!!! Also, Isabel told me that her movie should be coming to OH soon!!! YEA!!! So, needless to say, when I saw the CFers that I knew, I felt very comforted!! When I started watching the videos, I realized that I had already watched them before at some point! I watch lots of videos that people post, just in case I will need that info for Lil' Chris. I especially liked the "How Pulmozyme Works" video.

Alright, back to my call again...I WILL get to our decision eventually;-) LOL As I was talking to my fav nurse, she was telling me that Pulomozyme is more like a preventative medicine. It will help keep his mucus thinner so he can cough it up and out easier. She mentioned that Pulmozyme has been around for 15-16 years and it usually increases the FEV1. She went on to tell me that they usually start this around 5 years old and are on it for life. Now, I always knew that more treatments would eventually get added, b/c I know so many CFers around the world, esp adult CFers that do 3-4 hour treatments every morning and night...but I guess I was thinking it would happen later on since he is doing so well, not in just a few months!! YIKES!!! She said it's not very effective if it is used just when he has a cough. They have seen better results in long term use. This med may prevent a lung infection, a hospital stay or many, and will hopefully help his cough get better b/c it will make him cough more to get it out.

I asked her about HTS or Hypertonic Saline which is very similar and I know a lot of CFers on it, some even do both Pulmozyme and HTS! HTS has only been around for the last 5-6 years. It does not have to be refrigerated like Pulmozyme does, and it is more natural. HTS is also cheaper. It draws more water into the airways and makes it easier to cough out the mucus. Pulmozyme is approved my FDA and works to thin mucus so people can cough it out easier. Fortunately, it looks like our insurances will cover it...THANK YOU LORD, b/c Pulmozyme is $2,000 for a 30 day supply!!!

CFF.org has some great info on both, so click these links or any of the color links above to learn more...
Pulmozyme-http://www.cff.org/treatments/Therapies/Respiratory/Pulmozyme/
HTS-http://www.cff.org/treatments/Therapies/Respiratory/HypertonicSaline/

So, as I was talking to the nurse, I was telling her about my rough experience at my last visit. (BTW, thank to my fellow CF moms who helped me get through that rough time by sharing your stories with me:) She apologized and offered to get a second opinion from another doctor, who is the director of our CF clinic as well. He suggested one more week of Bactrim to see if his cough will clear up completely(he has one more day left and he isn't coughing, but when I ask him to cough, you can still hear that it is a little bit wet). He also didn't think that Lil' Chris needed to go on the Pulmozyme right away. He suggested that we do some research on it, and come back to our next visit in 3 months with all the questions we have about Pulmozyme and HTS and ask our doctor. His next visit is on May 16th and I've already got a list started...I LOVE the list app on my phone;)

Since talking to this nice nurse, it's seems as though if we want to keep Lil' Chris "healthy", then we are going to have to start one of these chronic medications soon. He will continue his Vest as usual and will do this new treatment either before or during his Vest either in the morning or at night. I can't believe he has been on his Vest for over 1,100 HOURS!!! My husband and I have a BIG decision as to which one to go with. I'm kinda thinking Pulmozyme, and Chris is kinda thinking HTS. Which one is better in the long run...that is the big question!?!?

Chris and I were trying to decide whether to start him on it in May, or wait til his next appointment in August, when he'll be 5 years old, since it has only been tested in 5 year olds and up. Actually, the CF Foundation recommends it in 6 year olds and up, but if we wait too long, he could possible get irreversible lung damage....we DEF don't want that!!! I say we start it in May, that way he will have a couple of months to get used to it and get into a routine before he starts Kindergarten in August....YIKES KINDERGARTEN!!!! That's a whole nother story;-) LOL

Although it is disheartening to add one more chronic treatment to his daily life at such a young age....this is NOT the end!!! There are new drugs in the pipeline that are tackling the basic defect of CF. I've talked about them before, but we are getting closer and closer now! Kalydeco (previously known as VX-770) is a new oral medication that was approved by the FDA on January 31, 2012 for people with CF ages 6 and older with the G551D mutation of CF. It is the first drug available that targets the underlying cause of CF – a faulty gene and its protein product, CFTR. Although this won't help Lil' Chris yet, b/c his CF genes are Double Delta F508, doesn't mean that there is no hope. They are doing test now on DDF508 patients to figure out a way to get it to work for them too:) They say possibly within the next 5-10 years!!! THIS COULD BE THE CURE THAT WE HAVE BEEN PRAYING FOR AND RAISING MONEY FOR!!!!!

So what does this mean?? We need to keep praying and keep raising money so they can do their research and GET US THAT CURE!!!! This past weekend was my birthday weekend and I decided that the best present possible, would be donations for A CURE for Lil' Chris and all with CF!! So, many many many thanks to Nancy & Al, my Aunt Mar, my Dad, Mandi W, and Melissa V for all donating in honor of my birthday and it truly was my BEST birthday EVER...not b/c we went skiing or went to see Monster Jam(that was pretty cool seeing the big trucks up close tho;)...it was the $440 donated by you guys that is going to help save my son's life some day!!!!!!

So PLEASE CONSIDER DONATING TODAY EVERY SECOND COUNTS...click this link http://www.cff.org/Great_Strides/LilChrisChris6765

Thanks for being so patient with me in our decision on Pulmozyme and keep praying for a CURE!
M
PS. His throat culture results was Staph Areus sensitive to Oxycillin(MSSA) his usual, so YEA FOR NO NEW BAD BACTERIAS!!!! PRAISE THE LORD!!!

900 Hours on Vest / Wet Cough / Clinical Study on DF508

When we were at Disney, Lil' Chris reached the 900 hour mark on his Vest!! Way to Go Lil' Buddy!!! Also....he hit a milestone thanks to his cousin R! He can now unbuckle his Vest all by himself!!! YEA!!! Now he doesn't have to undo the velcro anymore and make it so it doesn't stick. Anyone with this Vest would know what I mean;-) lol

When we came back from our Disney trip, of course we all got sick ;( It was actually the day after Memorial Day. Big Chris, Ayla, and myself all caught a cold and had runny noses. Ayla had a cough too. Lil' Chris woke up that morning at 6am throwing up until about 10:30am off and on. We don't think he had any soy protein, but it seemed like it. Hopefully he's not allergic to something else too.

Anyway, he had a slight fever that day and just hung out on the couch for a couple of days(he's sleeping on the couch in the pic above...which NEVER usually happens), but no more throwing up. He didn't eat much either, but he would drink so that was good. After those couple of days he was fine!! He still has not caught our colds which is GREAT, but of course he woke up on his birthday with a weird sounding cough. Then he had a bad wet cough the whole car trip to Cedar Point. We almost turned around. Once we got to Cedar Point and he started going on the rides, he didn't cough much anymore:) Since then, he has been coughing off and on... still a wet cough. The last 2 mornings he has woken up early coughing a lot. Once he got up and moved around, he stopped coughing so much...just off and on again. I left a message on MyChart with the CF clinic letting them know that I would keep an eye on him this weekend and if it gets worse I'll call them on Monday. Meantime, we'll do more Vest treatments and Albuterol if he needs it. Please pray it gets better so he doesn't need an antibiotic. I'll keep you updated.

On a good note, there has been some more promising results in some of the clinical studies that could help Lil' Chris since he is a double Delta F508, the most common CF gene!! This could be HUGE for CFers!! Please pray this is the CURE or more CONTROL of CF we have been waiting for!! Click here for the whole article or read below....

Phase 2 Study of Two Potential CF Therapies — VX-770 and VX-809 — Shows Promising Results in Patients with Most Common Mutation

June 9, 2011

Vertex Pharmaceuticals Incorporated and the Cystic Fibrosis Foundation today announced promising results from an ongoing Phase 2 study evaluating combinations of VX-770 and VX-809, potential medicines designed to treat the defective protein that causes cystic fibrosis.

The study enrolled 62 people with two copies of the most common CF mutation, known as Delta F508. The trial lasted three weeks. Participants took VX-809 for two weeks, and VX-809 and VX-770 together for a third week.

Patients who took the drug regimen showed a positive change in sweat chloride levels. Excessive sweat chloride is a key clinical indicator of cystic fibrosis. The findings suggest that VX-809 and VX-770 together improve function of the defective CF protein, known as CFTR.

“The results of this study represent a milestone in our efforts to expand the use of small molecules to attack the root cause of cystic fibrosis in those with the most common defect,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation. “These data, while early, provide important new information that validates our approach and supports continued study of a combination-therapy approach to treating the basic defect of cystic fibrosis.”

The CF Foundation worked with Vertex to discover VX-770 and VX-809, and has provided substantial scientific, financial and clinical support throughout the development process, including an approximately $75 million investment.

These positive results support further testing of VX-770 and VX-809 as a combination therapy. Vertex plans to initiate the second part of this Phase 2 study in the fourth quarter of 2011.

In people with the Delta F508 mutation, the defective protein does not move to its proper place at the cell surface. VX-809 is designed to help the protein reach the cell surface, while VX-770 aims to help the protein function more normally once it is at the cell surface.

The defective protein creates a cascade of symptoms, including a buildup of mucus in the airways and other complications that lead to lung damage and ultimately premature death.

The CF Foundation has fueled dramatic improvements in research and care that have significantly changed the prognosis for people with CF. In the 1950s, children with CF usually died before reaching elementary school. Today, people with CF live into their 30s and beyond.

CF Update / Positive Results for VX-770 Study!

Lil' Chris finished his Bactrim last night for his cough, but of course....he is STILL coughing!!! Arggggg!! So I called the CF clinic today and left a message. This is the first time this has happened, so I'm curious as to what they are going to do...maybe refill the Bactrim, or wait a little to see how he does, or wait and then put him on something different??? IDK. Do they even HAVE to wait?? I guess I'll find out when they call me back. Hopefully they call today!! His cough isn't super bad or all the time, but when he does cough...it doesn't sound the greatest. It just makes you sink and wonder what's going on in those lungs of his. I just pray it's not "the bad bacteria"...Pseudomonas.

Oh, and he also had another bad night on the 19th where he was throwing up again. We don't think he had any soy protein, so not sure why he keeps doing this. That makes 3 times in the last couple months I think. I wonder if we need to adjust his enzyme intake. I'll be asking the dr on 3/16 when we go for clinic visit. The pic above is him in between throwing up. Notice the trash can right next to him?? lol! If it's right next to him, he never gets it on the floor. He's pretty good about knowing when it's coming and when to get to the trash can. He's had enough practice, that's for sure. Poor kid.

Our snow FINALLY almost all melted a few days ago when we had like 60 degree weather, but that didn't last long!! We got hit again on Monday! Of course I had to drive home from work at the worst time!! But...I lived to tell about thankfully!! It was about 4-5 inches on top of 1 inch of ice and coming down hard! Cars were sliding all over the road, including me! Unfortunately, any way I go to my house there is a hill going down and up;( This time the roads were so bad that I started sliding down one hill sideways. I thought I was going to slide into the cop car at the bottom that was blocking the way coming up the hill I guess b/c cars were just sliding down it. Crazy, Crazy, but I made it home:) The Angels guided me the whole way!! Thank you Lord!! The pic above is the next day after my hubby snow plowed:) Thanks Honey!!

Now the following is some really encouraging news from the Cystic Fibrosis Foundation(what your donations for Great Strides fund). Lil' Chris' mutations are Double Delta F508(most common), but it's still promising for him...(click here for the whole article)...

Phase 3 Study of VX-770 Shows Positive Results

February 23, 2011

The Cystic Fibrosis Foundation and Vertex Pharmaceuticals announced today that VX-770, an oral medicine in development that targets the defective protein that causes cystic fibrosis, showed promising results in a Phase 3 clinical trial.

The trial was designed to evaluate patients age 12 and up who carry at least one copy of a CF mutation called G551D. The study included 161 patients who received at least one dose of VX-770 or placebo.

Patients who took the drug, compared to those on placebo, showed a marked improvement in lung function at 24 weeks, which was sustained for the duration of the 48-week trial.

Patients also showed improvement across all key secondary endpoints in the study, including reduced likelihood of experiencing a pulmonary exacerbation, decreased respiratory symptoms and improved weight gain. Each of these areas is critically important to the health of people with CF.

In addition, average sweat chloride levels of patients on VX-770 dropped toward normal levels, while those on placebo did not change — indicating the drug is impacting the underlying defect in CF. Excessive sweat chloride (salt) is a key clinical indicator of CF.

VX-770 is being developed by Vertex, and was discovered in collaboration with the CF Foundation, which provided substantial support to Vertex throughout the development process, including an approximately $75 million investment.

About four percent of people with CF carry the G551D mutation. More studies are needed to determine whether other CF mutations may benefit from VX-770.

“These results are highly encouraging. They provide scientific evidence that support our long-standing belief that targeting the underlying defect of CF may have a profound effect on the disease,” said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation. “We have much more to do to end the suffering caused by this disease, but these data are extremely exciting, especially for people with the G551D mutation and their families. The results also offer significant hope that a similar approach to treatment may help the majority of patients living with CF.”

The Phase 3 data support Vertex’s plan to submit a New Drug Application for VX-770 to the U.S. Food and Drug Administration (FDA) in the second half of 2011. Generally, the FDA takes between 6 and 12 months to review and rule on a drug application.

“The Cystic Fibrosis Foundation has played an instrumental role in our more than 10-year effort to discover and develop potential new CF medicines such as VX-770,” said Matthew W. Emmens, chairman, president and CEO of Vertex. “The data announced today reflect a significant investment of time, dollars and scientific expertise from both Vertex and the CF Foundation, and we look forward to working closely with the Foundation as we seek to bring VX-770 to people with CF.”

Said Preston W. Campbell III, M.D., executive vice president for medical affairs of the Cystic Fibrosis Foundation: “As a physician who has treated CF patients for many years, the VX-770 results are more than just numbers — they represent hope.” He added, “It’s not surprising that patients felt better on the drug because of the magnitude of lung function improvement and weight gain. These are important clinical outcomes, and the fact they were maintained through 48 weeks is very encouraging.”

3 1/2 year CF Clinic Visit 12/15/10

So sorry it has taken me this long to update you on Lil' Chris' last CF clinic appointment 5 days ago. I have been so exhausted lately!! It's tough working retail full-time, taking care of the house chores, and being a full time mom (especially to a CF kiddo) this time of the year. I'm trying my best though.

His 3 month check up went well. His weight was 36.2 compared to 34.5 3 months ago. His height was 40 inches compared to 39 1/4 inches 3 months ago. His BMI was 55% which is good(not sure what it was last time). The clinic updated to be all electronic now, but the printout that we get at the end of the visit STILL doesn't show all the measurements and percentiles like I wish it would!! I still have to ASK what they are and then try to remember them. I may have to talk to someone about that;-) lol

His CF doctor said his lungs are clear and he is doing GREAT!! She said not to change a thing! Question....is it weird that she didn't ask one thing about his Vest?? Like...is he doing it??? LOL!! Maybe she just forgot;-) At least WE know that he is getting his Vest every morning and night for 30 minutes each:) LOL

She put in his (electronic;) file that we are giving him 500mg of Vitamin C and Coromega Omega 3 + Vitamin D every day. She didn't seem to object that we are giving him these, and they seem to be keeping colds away, so we are going to continue to give it to the kids, esp Lil' Chris. CysticLife posted this on Facebook and I thought it was interesting since the extra Vitamin D seems to be working so well for Lil' Chris...http://www.foodconsumer.org/newsite/Non-food/Drug/denufosol_helps_cystic_fibrosis_1912100916.html

2 cool things happened at clinic this time....1. Ayla wanted to wear a mask(you know...she DOES have to do EVERYTHING her brother does;) so I put one on her and she left it on!! I couldn't believe it!! She's becoming such a big girl! 2. The cool nurse let Ayla have a hospital bracelet too!! She was sooooo excited!! Sometimes she wants to be so much like her brother that she even asks to take pills before she eats and will once in awhile ask to do the Vest too:) lol! Poor kid doesn't realize how good she has it yet.

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

Lil' Chris got a throat culture, so please pray that it comes back normal. I'll let you know when I find out. I was telling the nurse that Nathan(my nephew with Leukemia) was planning on coming to visit us soon, but his counts are down right now...she said that it would definitely not be a good idea for Lil' Chris to be around him when his counts are down, especially with what Lil' Chris has cultured in the past. It's just too dangerous for Nathan. So please also pray that Nathan's counts go back up so that we can get together in the next couple of months.

I think that's it for now, I've got to go to bed and get up early for work tomorrow again...housework didn't get done AGAIN, but oh well, I really wanted to update you all on how his visit went:)

Thanks for all your prayers,

M

PS. Next update......Christmas pics!!! YEA!!!! MERRY CHRISTMAS!!

Cayston is Available/Bad Sanitizers/Cold Update

Remember this post where I mentioned a new inhaled antibiotic getting approved by the FDA called Cayston??? Wellllllllll....IT'S AVAILABLE NOW!!! The CF Services Pharmacy has it! That's where Lil' Chris' meds all come from, b/c a percentage of each purchase goes towards a cure for Cystic Fibrosis:) Click here to see the whole article on the CFF website. Cayston is administered with a new device called the Altera® Nebulizer System that allows patients to take the medicine in less than FIVE minutes, a fraction of the time required for other inhaled antibiotics. It is the first new inhaled antibiotic developed for CF in more than a decade. I love this paragraph:) If only they could start making ALL of them to be administered in just 5 minutes...one can dream;) Although, it looks like it could possibly be a reality now:) All I can do is keep raising money and keep praying!! Thank you to everyone who has donated or raised money in the past to make this new drug be available for our precious CFers:)

How’s this for irony – the U.S. Food and Drug Administration is warning consumers to stop using two brands of hand sanitizers because they contain … dangerous bacteria.

That’s right. “Bee-Shield Hand Sanitizer” and “MD Quality Hand Sanitizer” (both made with aloe vera) were found to have high levels of Burkholderia cepacia, which “can cause serious infections in humans,” according to the FDA alert. Click here for the whole article. Kinda ironic isn't it? Sad...but ironic!

As for a quick update on every one's colds:

-Mine is great and was gone in practically 3 days.

-Ayla's nose has been slightly running still and it has been over a week now.

-Lil' Chris' nose never really ran like Ayla's and mine...it just kinda stayed clogged in his nose. Not sure if this is b/c of the CF and all the thick, sticky mucus or what???? Anybody else have this happen with their lil' CFer? Thankfully Lil' Chris doesn't mind blowing it out when we ask him and then he EVEN lets us suction it out, which is GREAT!!! BTW, I have to say a big THANK YOU to my sister, D. She told me before Lil' Chris was born to hold onto the lil' suction bulb that the hospital gives you when you have a baby. I am SOOOOO glad I listened to her, b/c the ones you buy in the store are CRAP! The hospital ones works like a charm every time;-) I even kept Ayla's too:) Thanks D!!!

-Lil' Chris also has a cough still too;( I think it might be from the drainage he might be having down the back of his throat, b/c the mucus is so thick. He has a CF clinic appt on the 31st, so hopefully it will be gone by then, if not, then hopefully we can get some answers. I'm kinda worried about this appt., b/c I think his weight is down again. He hasn't been eating as much lately.

Please pray Lil' Chris and Ayla get well soon!
M
PS. Guess what Ayla is doing now;)

New Nonprofit for CF/New Fundraiser

Thanks to all the good info I get from Cystic Life on facebook...here is another great article with promises of a CURE for Cystic Fibrosis. Click here to read about how a family member of someone with CF created a nonprofit organization called CFRx, to fund research for a CURE. I wish them all the best, and hope and pray that they will find a CURE for ALL people with Cystic Fibrosis.

One of these days when I have more time, I want to put together a list of all the places I have found that will do fundraisers. I can't do them all, b/c they may not be near me or I just don't have the time to do them, but there are A LOT of place out there that will help in fundraising for a great cause. I really want to share them, b/c maybe you might want to look into them or have the time for them. Some places really surprised me that they do fundraisers!

Today, (as I was typing this post actually;) I got an email from a blog reader, Nicole, who said she was encouraged to see another fellow CF mom dedicated to finding a CURE for CF! She saw on my blog how I like to do fundraisers and sent me a link to a place I have never heard of before that does fundraising! It's called Monkey Joe's, click here to see if there is one in your area. It's a cool Play House kinda! It has the big bouncy things, slides, jumping things, all kinds of cool stuff! It's seems like a great place to have birthday parties! The best part, is that they will donate 15-20% to your charity!! That's AWESOME!! I only wish we had one close to us;( Good news is that they have 2 really close to my sister, D!! My sister and her husband are all about fundraising for Lil' Chris and CF! They have raised $185 so far and they just got started!! I know my sister is going to love this place, especially since they sanitize everything, so they say;) She's a sanitizer freak like me;) LOL

Thank you Nicole for telling me about Monkey Joe's!!! I love to hear from my readers and get tips from them:)

If anyone else has any other fundraiser ideas, I'd LOVE to hear them and pass them along!!

On another note, I heard from CiCi's Pizza's Marketing Manager today and I am going to be dropping off 10 packs of Pin-Ups so that 10 of their stores can do Pin-Ups in May!! I'm SOOOOO EXCITED!!! Last year only 3 of the stores did them, so to have 10 this year is AWESOME!!! I wish I could get them to do it nationwide though. Maybe someday:)

If anybody knows of other places that will do Pin-Ups for Cystic Fibrosis, please let me know and I will try to contact them:)

We are all in this together, and we WILL find a CURE for Cystic Fibrosis!!!

I gotta give a big shout out to Jeanette and the 3 girls in her office at Wayne Saving Community Bank for doing Jeans 4 Genes last Friday!! They all paid $10 to wear jeans for CF!! YEA!! They may do it again in a few months too:) They do it once a month, and they each take turns in picking the charity. Jeanette works with me at Kohl's and donated her month to CF. YEA!!

THANK YOU JEANETTE & GIRLS!! YOU ROCK!!

M

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

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!!

"Dare to Dream" song by Dr. Francis S. Collins

Check out this video where the director of the National Institutes of Health, Francis S. Collins, M.D., Ph.D. performs his song "Dare to Dream" at the CF Foundation's North American Cystic Fibrosis Conference (NACFC) in Minneapolis, MN on 10/15/2009.

More than 3,000 leading scientists and health care workers from around the world have gathered to talk about the latest treatment and research into the chronic lung disease.

A pioneer in Cystic Fibrosis research, Dr. Francis Collins, opened the conference. Collins was part of the team that 20 years ago, discovered the gene that causes CF.

Today, he is better known as the director of the National Institutes of Health - the biomedical research arm of the federal government.

President Obama called him "one of the top scientists in the world," when he nominated Collins to the post in June.

Dr. Collins talked with All Things Considered about cystic fibrosis and some of his other priorities in his new post at NIH.

Isn't is great to see or hear that these doctors "GET IT!"

M

'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

Swine Flu Strikes a CFer

THE CYSTIC FIBROSIS Association is concerned that, following the death of 18-year-old Darina Calpin with CF, those suffering with lung disease could be at greater risk from swine flu. Click here to read the article about it. Some very interesting stuff that CFers should be aware of if they aren't already.
Please keep this family in your prayers.

Also please keep Richard, Kori, and their boys in your prayers. Richard is in the hospital and just found out that his cancer has spread. He amazes me everyday. He is 47 or 48 I think, and has cancer AND Cystic Fibrosis. I don't know how he does it. My prayers are with them.
M

Must See Research Video!

Thanks Angela for bringing this to my attention:



Isn't this video above awesome?! I can't wait to hear the results at the end of this year! I'll let you know if I hear anything:) Let's pray that this leads us to a CURE!!!
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 for Woo!!

Sorry it's been awhile, I was on vacation YEA!!! It was SO nice to get away! We went to the OC Boardwalk again and to the Wildwood Boardwalk. It stinks our vaca wasn't a couple of weeks ago...we could've met Nate, Tricia, and Gwyneth;-) lol I guess great minds think alike;-) lol Ayla got dedicated:) My sister-in-law and Mother-in-law threw a Dedication/2nd Birthday Party for Lil' Chris. We had a BLAST!! Also I went to my 10 year high school reunion!!! Can you believe that with my other blog I was able to lose 25 lbs in under 3 months to get ready for the reunion and to lose this baby weight?!? I sure was shocked every time I got on the scale!! Don't you all wish you would've joined me 3 months ago now??? Just kidding lol;-)

We had lots of fun on vaca and I took TONS of pics, way too many to post them all. I'm trying to upload some of them, so I hopefully will have them posted soon for you;) But for now, you can enjoy these pics of our 1st Annual Great Strides Walk in Wooster:) I actually didn't get any group pics with my camera we had our own sign and everything, but the professional photographer got some I just haven't had the time to order them yet. If you would like to order some, he reduced the prices and 100% of the proceeds will go towards a CURE for CF!!!! Visit www.federalphoto.com to see them or order them:)

Make an on-line slideshow at www.OneTrueMedia.com

Click here to check out Bethany, a 21 year old CFer who is pursuing her country music career. I thinks she is a GREAT singer and an inspiration to all CFers and I wish her all the best of luck;)

I also want to thank those who read my post about joining the CF Research Panal(click here to read that post and sign up if you haven't already). So far I have gotten $200!!! Thank you to those who mentioned my name:) Please let me know if it was you(they don't tell me who it was) or if you are going to join and mention my name, so I can thank you;-) I only know of 1 CF mom who mentioned my name. I haven't even had to do anything yet and I'm getting paid! Join today, it's really easy!!

Please Read!!! Seeking CF Research Panal

Hey Everyone,
I don't know if you'd be interested in this, but I just signed up for this Cystic Fibrosis research panel. I got $50 for joining and will get more money for each study I participate in. They do research for pharmaceutical and biotech companies to find out the opinion of people with CF and their caregivers on things like what treatments they are using and what things they would like changed.

They only asked me a couple of questions. I didn't think we would qualify, b/c Lil' Chris isn't even on any nebs or anything, but we did qualify and I got $50!!! You get money for every study you do, and you can opt out at any time. Don't worry, it's not any medical studies. Just over the phone questions or through email. You also get money for referrals, and for updating your info every 6 months. Not bad huh? ;-) Get money to help find a CURE ;-)

What I did, is I called the number below and left a message, then I emailed them my name and phone number and when was a good time for them to reach me. They contacted me the same day and it only took about 2-3 minutes! It's VERY EASY!!

If you do join, please mention my name, Michelle Neher, and I'll get credit.

If this does not pertain to you, please forward it onto whoever it may. They are only doing this
study in the US.

Thanks for all your help in finding a CURE. Big thanks to Julie for telling me about it;-)
M

PS. Let me know if you get qualified;-) I emailed this to those whose email address I have, or was able to look up on your blog. I was actually surprised at to how many blogs don't have their email connected to it! So if I didn't email you .....Click here to start earning money today:)

Here is what it says when you click the link above and then download...(it kinda jumbled it all together when I cut and pasted it on here, that is why I linked it above, but I tried to fix it;-).......

SEEKING: PATIENTS WITH CYSTIC FIBROSIS &CAREGIVERS OF YOUNGER CF PATIENTS

EARN $50.00 or more!!

We are conducting studies on the care of cystic fibrosis (CF) in the United States and are looking for adult (18+) patients diagnosed with CF - or the caregivers of younger patients – to join our research panel.

v Participating in this research will be an important contribution towards efforts to advance the quality of treatment and care for those living with CF!

v Qualified participants will earn $50.00 plus the opportunity to earn more money by participating in future research studies.

v To begin, we will need to ask you a few preliminary questions to see if you qualify which will take about 5 minutes. To contact us:

· Send an email to CF_Panel@wwmr.com with your name and telephone number, and we will call you back, OR

· Call Michelle Nordstrom toll free at 1 (888) 947-2339 ext. 112.

· Be sure to mention that you heard about this study from: Cystic Fibrosis Research, Inc. (CFRI) and Michelle Neher! Some details about the research panel:

v Any market research projects will be optional and you will be compensated for your time. Studies might include obtaining feedback on CF medications or suggestions to improve educational brochures.

v For in-person market research studies that you choose to participate in, all surfaces will be disinfected before and after interviews to reduce risk of cross-infection. Interviews will be spaced so that CF patients will not come into contact with one another. In addition, patients will not be asked to handle any materials that have been handled by other patients.

v The panel will never be used to provide promotional materials or to sell anything, and you can opt out at any time. Your information will be held in the strictest confidence.

About WWMR, Inc. WWMR, Inc. is an independent marketing research and strategic consulting firm. More information about WWMR can be found on our website: www.wwmr.com

Did Somebody Call a Fire Truck?!? =)

GUESS WHAT???? I got a fire truck to come to our walk next Saturday!! YEA!!! They will be there from 10-11. I'm SO excited!! I know the kids will LOVE it!! Not so sure how this will work with the germs and trying not to let the CFers cross-contaminate each other?!? I guess we'll see how it goes this year:)

I have been getting SOOO many people come up to me saying that they saw the commercial we made!! Some say that they thought I was in their living room, b/c they heard my voice;-) LOL I even got an email from someone who saw the commercial!! Her step brother passed away from CF and that she lives in our area. She said that she would love to join us and help out in any way possible! Thanks Lisa;-)

I'm SO glad that the word is getting out there about our walk! I hope we have a GREAT turnout next Saturday:) I'm getting REALLY excited and can't wait!! I also can't wait, b/c my sister D is driving in with her 3 kids the day before the walk!! Having them there to witness our FIRST walk in our town is AWESOME and just makes it that much better!!

To think....a year ago I had this whole walk all planned out in my head, and now...well, now it is all coming true;-) THIS ALL STARTED BECAUSE OF YOU, LIL' CHRIS!! Look at the difference you are making in this world already, and you are not even 2 yet!! =)

If you haven't donated yet, please click here to donate. Time is running out:) If you want to know where your money is going, read this email I got from the CFF...(it goes towards finding a cure;-)....

Research update: Your donations at work!
1. Inspire Pharmaceuticals, Inc. (in RTP) recently announced positive results from a Phase 3 clinical trial of denufosol, an inhaled therapy for the treatment of CF. Denufosol is designed to improve chloride transport in the airways and enhance mucus hydration and clearance.
--The study, called TIGER-1, involved 352 patients over a 24-week period. It showed significantly improved lung function in patients taking the drug. The data from this trial is particularly encouraging because it brings the CF community one step closer to a novel treatment that addresses the basic defect in CF.

2. The CF Foundation announced recently that VX-770, an investigational oral drug aimed at treating the basic defect in cystic fibrosis, showed positive results in a 28-day, Phase 2 clinical trial. These data bolster the successful interim results reported from the first part of the trial in March of this year. Both studies were done with patients who carry the G551D mutation of CF.
--"Data from the Phase 2 trial of VX-770 provide evidence that a small molecule can address the basic defect in cystic fibrosis, and suggest that modulation of CFTR may play an important role in CF therapy," said Robert J. Beall, Ph.D., president and CEO of the CF Foundation.
VX-770 is being developed and tested by Vertex Pharmaceuticals Incorporated, with support from the CF Foundation. The potential drug aims to open the chloride channels that do not function correctly in people with CF.


Again.....all donations go towards finding the cure that we all want SOOOO desperately, so that all CFers can live past 37 years of age, get married, have children, and grow old like the rest of us. Aren't they worth it?????
M
PS. I can't believe my lil' man is going to be 2 on Saturday!! =)
PPS. Thank you to everyone for all the great entertainment ideas for our walk. I really appreciate it;-)