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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