Cough Video / $125 CF Survey

I'm gonna try to keep this short, but no promises;-)

I didn't post about it before, but Lil' Chris had a bad night the night before Ayla's birthday. We think it was the Chex Mix that he had. That was the only thing he ate that was different. He threw up about 5 or 6 times and was just laying on the couch from nap time to bed time.

Then this past Wed, it happened again! He didn't have anything new, so we still are not sure what caused it this time. He was fine all day, then when he woke up from his nap he was complaining of his head hurting right above his right eye. You could tell he was in a lot of pain, b/c tears were just coming down his face. I felt so bad for him esp since I didn't have any children's Tylenol in the house and I was just about out the door to go to an A-team event for Kohl's(Woo after School Skate Club). I told Chris to go and pick some Tylenol up when Ayla woke up, but he never got to b/c Lil' Chris started throwing up. The A-team event (actually it's called Associates in Action now) was for 3 hours. So afterwards, I called and Lil' Chris was sleeping on the couch, which NEVER happens, and his head still hurt and was throwing up. So I picked up some Children's Tylenol on my way home. He took it, but then threw up, so not sure how much actually got down. He did seem to start to feel better about an hour later though after a few more throw ups. He didn't eat or drink anything though, and we didn't do his Vest just like the night before Ayla's birthday. That's usually the only time I don't make him do his Vest. I don't want to stir anything else up...if you know what I mean;-) He slept good throughout the night other than asking for a drink of water, which I was more than happy to give to him. The next day, Oma said he was still complaining of his head hurting. She gave him more Tylenol before I got home from work and his head seemed better. He was complaining of a bellyache tho, but not for long. We have clinic on March 16th, so I'll have to ask the dr about all of this.

To top it all off....he has had a wet cough for over a week now. I sent a message to the CF clinic about his cough through My Chart. Does every clinic use My Chart??? I LOVE it!! I can send them messages, ask questions, see his chart, see his upcoming appointments, see his throat culture results, and more!! It's a GREAT tool that they added recently. Anyways, to make a long story short....he is started Bactrim last night, 10ml for 2 weeks. Since he was on Augmentin a few weeks ago for an ear infection, he couldn't go on it again, so that is why he is on Bactrim instead. He doesn't seem to mind it tho.

Photo and video editing at www.OneTrueMedia.com

To all my CF buddies...email CF_Panel@wwmr.com to sign up to earn some extra money while helping out the CF community, or you can call 1-888-947-2339 extension 112 for Michelle Nordstrom. So far I have raised $525!!! WooHoo!! You get $50 just for joining!! Please mention you heard about the study from me, Michelle Neher, and I'll get another $50!!

Also, there is anther open CF survey right now so call 1-888-798-1889 extension 255 to do a 60 minute CF study and you'll receive $125!! This study is for you or your CF child that is between 6 and 17 and is currently on Tobi. The ladies name is Chris and she said to call even if you don't qualify b/c they may have another CF study for you!

Thanks and I'll let you know if I come across any other legit CF studies or surveys.

Please pray Lil' Chris' cough goes away quickly and that it doesn't turn into anything serious.

So much for keeping it short;-) LOL!!
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

VX-770 and VX-809=Potential CURE for Cystic Fibrosis!!!

Last Thursday 11/12/09, Chris and I went to a Cystic Fibrosis Volunteer Appreciation Reception. The special guest speaker was Robert Beall, the President and CEO of the Cystic Fibrosis Foundation! Exciting, right?!?! I know! It was such an honor to meet him and shake his hand. It is thanks to his dedication and the doctors and scientist hard work that my son's life expectancy is 37 instead of 5!! After the reception, I went up to him and asked to get a picture with him, and then we talked for a minute and I told him about my blog and how I talk to CFers all over the world! He seemed impressed for me only having a 2 year old with CF and doing so much already:)

He went over lots of good info, mainly including 2 drugs that are soon to be approved by the FDA and available to patients. These 2 drugs take care of the root of the problem in people with Cystic Fibrosis. They are called the Potentiator VX-770 and the Corrector VX-809. These drugs have the potential to add 10-15 years of life to patients with CF!!!!

The Potentiator VX-770 is in Phase 3, the Definitive Trial, and the Corrector VX-809 is in Phase 2, the Human Safety and Efficacy Trial. Drugs have to go through 3 phases which costs millions of dollars to do. Thanks to the money we raise through Great Strides, the Cystic Fibrosis Foundation can fund these drugs. Lil' Chris wouldn't be as healthy as he is today if it weren't for the CFF. Currently there are 30 drugs in the pipeline. Only 2 up until today have been approved, and I personally know many CFers that use TOBI. There are 13 drugs to be approved by the FDA within the next 3 years!!! Good news!! 4 of those drugs are in the last stage, phase 3. Great news!!

What are so special about the VX-770 and VX-809 drugs?? They could stop the disease at the cellular level. The basic defect in those with CF is that the chloride can't get out of the cell, CFTR. In a normal cell, proteins are transported to the outside of the cell, allowing chloride to flow in and out of the cell(see pic above). In a CF cell, nonworking proteins are transported to the outside of the cell and don't allow chloride to flow. Instead a thick, sticky mucus is formed. Robert Beall said, "Can't we just find a pill that will open up these chloride channels?" Well, the VX- 770 and the VX-809 do!!!

The VX-770 increases the opening(gating) of the CFTR channels with just a pill!! Right now is it working for those with G551D mutations, but Beall believes that in time it can work for other mutations as well. In a CF cell successfully treated with VX-770, the drug binds to the nonworking proteins on the outside of the cell, allowing chloride to flow and prevent mucus from forming. The VX-770 increased CFTR activity in Preclinical studies, and after a 2 week clinical trial, they were at normal levels!! Amazing! Their lung function improved 12%!! They are doing this study on children as young as 6 years of age and up! I didn't know they did these kinds of studies on children so young!

The VX-809 increases the number and function of CFTR channels. It is for those with double delta F508 mutations, which is what Lil' Chris has. The VX-809 helps CFTR to get to the membrane and helps get chloride through. These clinical trials are for those who are 18 and older. This one is very similar to the VX-770. Instead of increasing the opening so the chloride can flow, it makes a NEW opening to let the chloride flow. They do the same thing, but just in 2 different ways.

Robert Beall told us that "CF patients loose 2-3% of lung function EVERY YEAR. There is an 80% chance of drugs working when in phase 3. These drugs could add decades to CF patients lives! This is the most exciting time in our history, and we are closer than ever to treating the basic defect in CF!"

We need to pray, pray, pray that we raise enough money to keep these drugs moving forward to find the CURE for Cystic Fibrosis. These drugs could potentially be the CURE for Lil' Chris and other young CFers. It may not be the cure for older CFers, b/c it can't undo any lung damage that has already happened. But it can help it from getting any worse, which could still increase their life expectancy. Also, a lot less pills and treatments which is a HUGE PLUS!!! This all equals to a better quality of life:)

Other exciting news that he shared with us, is that they are teaming up with Warner's Brothers and CVS. CVS will promote movies that benefit Cystic Fibrosis! This will be huge awareness for the public! The more awareness there is about CF, the faster we will get to a CURE:)

Click here to read more about these drugs and to read about a fellow blogger I know, Somer Love, who is 30 with CF. Click here to read her blog.

Click here and donate today and do your part to help these drugs move a lil' faster to becoming Lil' Chris' CURE!

Click here to join a CF Panel if you are a CFer or a caregiver of a CFer and want to help find a cure for CF and get PAID to do it! Don't forget to mention my name;) Thank you to Traci Liberto for being the last one to mention my name:) A few days ago they called to update my info and I got $25! YEA!!! So far, I have earned $475 for basically doing nothing!! It's easy money to raise for Great Strides for a CURE;-)

With your help, CF will stand for CURE FOUND!!
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!!