Monday, July 23, 2012

RDH12 and the LCA conference

This past weekend, my mom and I attended the Lebers Congenital Amaurosis conference in Philadelphia.  Mat didn't go this time - he and my dad stayed home with the kids.

Me?  I don't miss a chance to see friends.  Not this girl.  So off we went!
My mom sporting the robes they had in our rooms.

We had a great time.  I got to meet new families (not RDH12 effected, unfortunately) and it was incredible.  Each evening we went out to dinner as a group of 12 or 14 and talked and laughed and just de-stressed.  We are never more at home than we are with other families whose children are effected by Lebers Congenital Amaurosis - I don't care what type it is.

 Front Row, Amy and her husband Chris, woman from Austrailia and her sister right behind her.  (came all the way from Austrailia because her child's gene was just discovered).  Back row me, then Troy and Jennifer Stevens, and Lori (from our RDH12 family)

The most exciting was to see my friend Jennifer Stevens and her husband Troy.  You have to visit her blog - she is AMAZING.  You think I fundraise a ton for Finley?  You need to meet this gal.

Jennifer will always be my LCA sole mate and forever friend.  When we were at our lowest low, we found Jennifer and her blog.  We talked to her on the phone and listened to her positive attitude even though her son is completely blind.  We have talked and talked over the last 3 years since Finley was diagnosed, and have now seen each other twice.  (Jennifer lives in California).

To say Jennifer is dear to me is not enough words for what she has done for our family.  Before we had our RDH12 family, I had her.  And we are still each others biggest cheerleaders.  Jennifer's son's gene was recently discovered and we could not be more overjoyed for her.  Now, like us, she has a direction and a goal.  And one day, when we meet at these conferences, our children will SEE each other and it will be amazing.

We didn't learn much that we don't already know about RDH12.  Because we are doing all of the funding, we are in the "inner circle" so nothing gets by us.  I would say besides being with like minded families and friends this weekend, the biggest thing I took away from it were meeting amazing blind teenagers, and young adults.  People who have little to know vision living full and productive lives.  We listened to them talk about what it was like to grow up blind and how they developed friendships and independence.

I came away with renewed strength that Finley can do this if a cure doesn't come before it is too late.  That she will not have to live with US forever (ha ha).  That we need to push her independence so far beyond her comfort zone (and probably ours) to make her successful.  This last thing is a MUST, and something that Mat and I are going to dread, I am sure.

 I came away with renewed hope.  And I was also very proud of us - the RDH12 Fund.  So proud of the $600,000 we have raised.  So proud of the 14 families and 18 children that are part of our foundation/family.

We did it.  We will continue to do it.  And I hope, that when the conference comes around in 2014, we will be there to say that RDH12 is in clinical trials with humans and that Finley is MINUTES away from a cure.

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