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Great Story and Hope...Go Neuren!!!

  1. daprincze

    84 Posts.

    Apologies if this story has been posted previously...was reading it for the first time tonight and couldn't help to share it...

    This was a double-blind placebo/medication test so we understood going in that there was a chance that Amanda would not get the actual medication but the sugar water placebo. As it turns out this is what appears to have happened with Amanda as we did not see any changes in her behavior at all; but God has a way of working things out for our good even when we do not know what to pray for.

    I say this because we did get to meet and talk with other parents who saw tremendous differences in their daughters’ behaviors only to see regression when their time in the trial was over.
    This gave us such great hope in the face of great discouragement that there is a cure out there.

    We continue to pray that this medication continues to be fast-tracked, made available very soon and that it accomplishes its purpose to tremendously improve the quality of life for adolescent and young women with Rett syndrome, as well as help anyone who may suffer from traumatic brain injuries or strokes.


    We are even more excited and more hopeful now with the latest report from Neuren Pharmaceuticals that we are now reading while Amanda's dad is recuperating from back surgery number six and I am putting off surgery for a torn rotator cuff in my right shoulder.

    This journey is not easy but has been and continues to be a tremendous learning and unconditional loving experience for us. There is light at the end of the tunnel and it is shining bright for the world of Rett syndrome."

    - James & Cake Woodley

    (reference - see below link for full article...)
    http://www.rettsyndrome.org/blog/NNZ2566-participants

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