a different kind of perfect

i'm a mom...on a mission...to enjoy life everyday...appreciate the little moments...try not to get so easily annoyed...raise my kids with a faith legacy that leads them to continue to be amazing people...and to make my husband feel as special as he makes me feel.

What is Cystic Fibrosis?

CF is an inherited chronic disease that affects the lungs and digestive system of about 30k children and adults in the US (70k worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that both clogs the lungs and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. [www.cff.org]

Tuesday, June 24, 2014

Please Do Not Skip This Eat. Pray. Dean news!

 
Two posts in one week?  A very good reason for this.....
 
THIS this THIS IS WHAT YOU ARE DONATING FOR!!! Today, Phase 3 Combination Studies of Ivacaftor (Kalydeco) and Lumacaftor (VX-809) Show Positive Results in Most Common CF Mutation. Translated? Participants in this trial showed significant and consistent improvement in lung function and in other important health measures, including weight gain, and a reduction in the rate of pulmonary exacerbations. Next step? seeking FDA approval. This is a HUGE step in the treatment of CFers with two copies of most common mutations of CF, DF508. The next part that makes this post so amazingly awesome for our family? Dean has two copies of the DF508 gene so THIS, our friends, is the FIRST combo of drugs that we pray will be available for our little man. It is not a cure, but a significant milestone to treating HIS CF. The CFF WILL continue to invest in funding companies to develop drugs for other mutations as well as finding other drug combo's for DDF508 that will further improve the lives of those with CF. We can't say CF stands for Cure Found yet, but this IS a step closer. Please continue to support this quest, please, we are so close. Continue to pray for Dean's health and as Dean's great-grandpa does every day, pray for those scientists, pray that they hit the jackpot for ALL of those with CF.

thank you [tears]. xo

Please share with your family and friends.

To read the press release: http://www.cff.org/aboutCFFoundation/NewsEvents/6-24-Vertex-Phase-3-Results-Lumacaftor-Ivacaftor.cfm
 
 


No comments:

Post a Comment