Our old CF Commercial that plays on MCTV. Still working on this years.

Saturday, August 8, 2009

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!!

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

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!!


1 comment:

Oma & Opa said...

Love the video! That is fantastic news about the vx-770. I think I will try to highlight, copy and paste this so I can send it on to others. I hope it works.
We are at $2249.42 for CF & still have Giovanni's Deli collecting.
Anyway, glad you are home safe. Cant' wait to come out & see you all in a few weeks!
Give my grandbabies lots of hugs & kisses for me and one for you & Chris.
Lots of love to all