Sunday, March 6, 2011

Update on Research for Finley

I was hoping to have everything 100% in place before I wrote this post, but I am "stalling" for time until I get all the pictures of Finley's visit to Connellsville last week.  I am hoping to post those either tomorrow or Tuesday once I have them all.

Last week, we got a call from Spartanburg (the Foundation that helps the monetary side of our Fund) and they have FINALLY entered all the donations we have received since we started our Fund last October.  They just had to finish entering all of the telethon checks (there were so many - it was a big task), and they finally finished.

We have raised $75,000 since we started the Fund.  $75,000.  Just let that sit with you a little while.  I still can't believe how amazing that is.  What amazing supportive friends and family we have.

So - Mat made the call to Dr. Bennett.  (the researcher that is going to do the RDH12 research).  She was very excited.  She said she already has the two people who are going to do the research and has ordered what she needs to get it started.

We can't wait to go down to Philadelphia and present the check.  And we are going as a group - Lori and her daughter; The Fiore's and their children; the Pryor's and their children.  And us.  We are all going to be together in Philadelphia on the 28th of March to present the money to Dr. Bennett and her lab.  Dr. Bennett would like there to be a press release and we are happy about that as well.  We want everyone to know what we are doing - and that thanks to our family and friends, a cure is going to become a reality.

By the end of this first year, a cure should be sitting in Philadelphia.  That $70,000 will start the CURE of RDH12.

Do we have a long way to go after this first year?  Yes.  Will it cost into the millions once they are ready for human trials?  YES.  But we can do this.  We will cure our children.  And I know all of you who know us will be right there with us.

So - the reality is here.  The 28th of March will be the beginning of the cure for RDH12.  I have waited a long time to be able to say that.  When we started this journey almost two years ago, we had little hope.  Now, I have FAITH that Finley and kids like her will be cured, and will always see.

Stay tuned.