Wednesday, March 30, 2011

Our European Sister

I know I have mentioned this before in regards to our RDH12 Fund for Sight, but I find it even more important to mention now.

When we first started our endeavor last fall, and decided to become an official non-profit, Dr. Bennett (our researcher) said she knew of a family in Europe that had a child with RDH12 and she put us in contact with her.

We liked Sylvaine right away.  She called and we talked for hours.  She is tough, strong, and aggressively searching for a cure, just like we are.  She isn't afraid to approach researchers, doctors, anyone to get answers to her questions.  She is amazing.

So - she became part of our efforts right from the beginning.  The problem we ran into is how to incorporate the money she raised in Europe with what we were raising in the United States.

But Sylvaine quickly solved that problem, and opened our sister European part of RDH12 and called it "Candle in the Dark".  (Isn't that the best name?)  Click HERE to visit their site.  (or if you cannot see it, go to our RDH12.org site and visit from there.

So far, Candle in the Dark has raised $25,000 for RDH12 research.  This money is on top of all the money we have raised here in the United States.  As you know, our new goal is $250,000 to be reached by March, 2012.  So far, we have over $30,000 here in the United States raised toward that goal, and $25,000 in Europe toward that goal - making us almost a quarter of the way there.  Already.

We have a long way to go.  But we have faith that we will reach  that $250,000.  Sylvaine and her family promise to fly to the United States to be here with us when that happens.

So  - we have 5 American families so far, and one great big European family that will help us cure RDH12.  We are so excited that Dr. Bennett introduced us to Sylvaine.  Her "I will not take no for an answer" attitude is exactly what we need to get that cure.

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I wanted to clear up that Finley is not adopted.  She is our biological child, and unfortunately, it was Mat and I who passed LCA on to her.  I only say this because we have several people searching our blog for Finley an adopted child.  Not that there is anything wrong with it, but Cainan is our handsome boy from China who we adopted in 2008.  You can read more about his story to the left.


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