Baby Stepping to a Cure

Yesterday, preliminary data was released from studies in patients with two Delta f508 changes (mutations) that show promising improvements in lung function. Good things are happening here and we are happy to share that Dean is homozygous for the Delta f508 mutations. The good news is that lung function is improving in the trial participants (which is the goal of CF therapies).  If you read this article, you'll see that they are unclear why sweat chloride levels (a key indicator in the diagnosis of CF) in these studies has not improved with this drug combo but hopeful that the final results of the study will prove more promising and enough to move it forward.

I don't know what to think. I'm boggled by the fact that we're in the here and now, somewhere in middle America, dealing with this disease that is so very close to being fixed.  Dean has years before he can benefit from these results but O M G if it all works out and he does?!?  I will simply be amazed. Faith carries you through so much and when faced with the oasis during your struggle, you want to grab and hold on and pray your heart out that it turns into reality.

So I'm going to pray twice as hard, consider buying stock in Vertex :) and will continue raising money so they can get to the results we need.   As I refuse to sit and let CF define our lives...we're trekking on.  

So, thank you to you all...for helping us fundraise in so many different ways:  helping us pull together all of our fundrasiers, for branching off and raising money for us on your own, for sending out links to your friends and family to help us expand our reach, for sending up the prayers to the big guy and for raising awareness alongside of us.  We hear stories all the time about how Dean came up in conversation and they shared his story, his website, his struggles and we so very much thank you for keeping it going.  Our first Great Strides event in Reno, NV took place last weekend, and thanks to Aunt Kalena for fundraising, taking our team west and raising awareness in San Raphel park!!

Team Eat. Pray. Dean Reno, NV (5.5.12)

Each of you and your work and efforts are helping us turn this mirage into a reality; you are the reason we are able to successfully contribute to this fight. Dean is the reason we do it but our faith, family and friends are the way we do it. Continue to pray for Dean, for those scientists, for the money managers at the CFF, for the people in the clinical trials and for every single person that we are reaching.

It's never to late to help us cast our net...please join our team in fundraising for our cure - we could really use your help in sending out a page to your family and friends. Many many thanks!

Join us on May 19th for our Orland Park Great Strides event

Sign up as part of our team and cast your net

Join us on June 19th for our Ellicott City, MD Great Strides event

Save the Date for our Chillin' & Grillin' for a Cure event (July 14th)

Read the article prompting this blog!

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San Raphel Park, St. Patrick's Grove



San Raphel Park Labryinth