CF Mom's Group & New Science from the CFF

One of the most encouraging things about last night's meeting was seeing the Foundation's Pipeline of new Drugs to treat CF and how it's evolved in the last 7 years!!

Below is the Pipeline from 2003 (No drugs in phase 3 trials)

Below is the Pipeline for 2010!! To many drugs in phase 3 to count in phase 3!

Just look at how far we've come!! This progress is your money from Great Strides and other fundraisers hard at work!!

Last night's meeting was the largest group that has ever gathered for a mom's group (10 mom's and grandmas) and my first ever.   I have to admit I was very enticed by the members of the foundation coming to the meeting.  But once I got there and got to meet some local faces of CF mom's I was very glad I came.  I have been reluctant in the past to attend these meetings something about bonding with women over our sick kids turned me off.  But I was wrong!  I learned so much last night from mom's who had been where I was, and about medicines Ayla was taking.  These meetings are well of knowledge that I had been missing out on!!  And the ladies were all women I could see myself be-friending.  So needless to say I changed my tune!!

Claudia Werner gave the Science update after dinner and it was encouraging!! The first thing she spoke about was the pipelines above.  

She told us that:        

• 20% of Drugs that make it to Phase 1 -get to patients
• 50% of Drugs that make it to Phase 2-get to patients
• AND 80% of Drugs that make it to Phase 3-get to patients 

That's great news for us waiting for the VX-770 & Corrector 809.  I asked a question I had been wondering since hearing about this "control":

Would CF patients still have to take enzymes and do other treatments once this comes out?

And the answer was to my understanding that this drug if approved would STOP CF in it's tracks.  If you have a young child who doesn't have lots of lung damage, their lung and pancreatic function could greatly be affected.  So there is a possibility that Ayla will not have to take enzymes once these drugs are approved!!  It won't fix what's broken....and won't take CF away but our kids won't die of CF they will die with CF.  

She then went on to tell us that Dr. Beall from the CF foundation said that this drug will affect all organs positively.  

This should give all of us such fuel for Great Strides 2011, I know I will work to make next year be the year that we fund the "control drugs" for CF.  Trials of the combination of VX770 & 809 should begin within a year!!

It really was a great night, we talked about homeschooling, stages of life for CF kids, Doctors, fundraising efforts and lots of other things.  I know I will be attending other meetings and am excited about that.  

We are so close to making CF=Cure Found-  It's very exciting and on the top of my prayer list! 

I wanted to share everything I heard, I'm sure I forgot some of it-so much information to process.  But it really is great to know that the foundation is working diligently toward this goal.  And if you look above you can see progress is being made.  

It's definitely something to be excited about if you live with CF.  Our kids, friends, brothers, sisters, aunts, uncles, moms, dads and all people with CF could be given a new lease on life!  

I desperately want to be able to tell Ayla when she's old enough to understand the miracle of the cure that was created especially for her.  

~krista