© 2016 by Avie Rose. Proudly created with Wix.com

There's more to love:

I Love You So...

February 15, 2018

1/4
Please reload

Please reload

Search By Tag:
Enjoying the read?  Here's another:

HUGE news!!

September 29, 2016

Okay, so for those kids living with two copies of the delta F508 gene mutation (this is the most common mutation and it's what my little Avie Rose has)- life is about to get much, much better!

 

The "miracle" drug, Orkambi, that was developed by Vertex, has been approved for children ages 6-12!  You can read more about this breaking news HERE

 

I've talked to adults with Cystic Fibrosis who take Orkambi, as well as one of the scientists who actually developed the drug and everyone says its a Godsend.  It is a CFTR Modulator therapy, which is designed to correct the function of the defective protein made by the CF gene.  What?  I know.  Here is the link so you can read about how this works: https://www.cff.org/Living-with-CF/Treatments-and-Therapies/Inhaled-Medications/CFTR-Modulator-Therapies/

 

Basically, it helps keeps CFers out of the hospital and reduces the rate of pulmonary exacerbations which lead to accelerated lung disease.  Yay!

 

Now, kids can start taking it at 6 yrs old!  I can't wait to see what this does to the average expected lifespan.

Share on Facebook
Share on Twitter
Please reload