We happen to be one of the rare families that knows about our infant's Fragile X diagnosis at birth. With that, brings research opportunities. We found out about the USC study through our contact at the UNC study. This study has three visits, two of which are completed at our home and one completed on-site at USC. The first visit was completed at 9 months, I don't think I even did a post about it as it was right in the middle of Thanksgiving and the Arbaclofen (STX209) blind trial with Ayden.
This...
Thursday, February 28, 2013
USC Infant Study
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Friday, February 15, 2013
Advocacy Day 2013
In one of my last posts I talked about how much I really wanted to attend Fragile X Advocacy Day. Just as I had resigned myself to being unable to attend, a couple things fell into place that have allowed me to go. I'm so completely excited for this opportunity, I've been struggling to put all this excitement into words since I found out and still can't, but wanted to put an update on here anyhow! Since we received Ayden's diagnosis, I have been actively sending letters to representatives and senators about Fragile...
Friday, February 1, 2013
4 Color Rebellion Article
I wrote an article for a gaming website about how we have used the iPad with Ayden for education. Head on over to 4 color rebellion and check it out! I love to see exposure to Fragile X in place you wouldn't normally look, and Dave was kind enough to give the NFXF a little plug as well.
-Co...