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Larry,Just a quick note to thank you for choosing to work on...

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  1. 528 Posts.
    Larry,
    Just a quick note to thank you for choosing to work on Rett syndrome. We are a small but very
    motivated group, and I am happy to help in any way that I can with this proposed trial. I have a
    personal interest – my eldest daughter [name deleted] is almost 10 yrs old. She has one of the most
    common mutations (R168X), and is pretty severely affected. Wheelchair bound; g-tube fed;
    intractable seizures; lost speech; lost functional hand use; braced at ankles, trunk, and elbows to try
    and slow progression of scoliosis and contractures. Despite all this, she has a smile and attentive
    eyes that move mountains. She is very slowly learning to communicate through an eye-gaze
    activated computer. Though RTT is not degenerative, we know time is our enemy in combating these
    secondary issues. Be safe, but be swift – our hopes and dreams are with you!
    Looking forward to our shared success,
    Warmly,
    [name deleted]





    Well doesnt that make you all warm and fuzzy and put the thought of $5 share prices to the side for a while.
 
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