Tuesday, January 31, 2012

Awesome news brings me back

I'm back!!! Ok so I needed to take a lil break from blogging I figured Jan would be perfect since there's not to much gong on...

However, there has been so many great things happening. I posted about Dottie she's pretty much AMAZING!!

Then today I woke up to some very exciting news in the CF community. Kalydeco formerly known as Vertex 770 was approved by the FDA 3 months early. You can read more about Kalydeco HERE. I am so excited for all my friends with the mutation G551D about 4% of the CF population have this unique mutation. This pill called "Bluelightening" by my good friend Emily,  is taken twice daly and basically will address the underlying cause of CF for this mutation. So exciting!!!

The mutation I have is Double Delta F508 which is the most common mutation about 90% of the CF population have this. There is currently still research being done to find something for Delta F508 including a second phase trail combining Kalydeco with vertex 809. Kalydeco is opening up doors, its great progress.

So YAY!!! Go out and celebrate!!!! Spread awareness and fundraise we are SO close!


Lissa said...


Formerly known as Frau said...

woot woo that is awesome news! Welcome back you have been missed!