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A call to action.

Yesterday, I had a chance to talk to someone who works at a big pharmaceuticals company and, in talking about my son, Fragile X Syndrome was mentioned. This is a company that is not currently doing Fragile X research but he was aware of it and is interested in it which was very nice to hear.

What I really wanted to share, though, were his comments on parents. He said that he’s been studying parent advocacy groups for 20 years and he said that active, vocal parent groups make a huge difference in finding treatments and cures. He said that when parents stand up and make their voices heard, funding follows, research follows.

On March 1st and 2nd the National Fragile X Foundation is sponsoring advocacy day in Washington, D.C. It sounds intimidating but the NFXF provides training and schedules the visits. You aren’t being tossed to the donkeys and elephants unprepared! This sort of advocacy works and as close as we may be getting we are not there yet!

Please consider registering at http://fragilex.org/html/advocacyregistration2011.htm and joining Eric and I and (hopfully) lots of others in Washington!

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