Keep up with the Fascianos....Paula, Anthony, Matthew and Benjamin.
We are dedicated to raising awareness about Fragile X Syndrome, a syndrome which affects Matthew and Benjamin.
We are passionate, we work hard, we love each other very much, and we wanted one central place to keep everyone updated on our happenings!
Friday, October 24, 2014
The Fragile X Study
So, I had a "first" today. Someone tweeted me and asked me to help spread the word about a Fragile X Study. I knew about it because the NFXF has been pushing information about it for a couple of weeks now. And I've spread the word among my local families, but @Chanel_Ross asked me to blog about it, so I thought I'd share it here too.
THE FRAGILE X STUDY is seeking male and female participants between the ages of 15 and 55 who have been diagnosed with Fragile X Syndrome to enroll in this clinical trial. This clinical trial is studying the effects of a medicine on the cognitive and inattentive symptoms in people with Fragile X Syndrome.
Fragile X Syndrome, also known as FXS, FRX or Martin-Bell Syndrome, is a genetic condition that causes intellectual disability, behavioral and learning challenges and various physical characteristics. Fragile X Syndrome occurs in males and females, but males are more frequently affected than females and generally with greater severity. Fragile X Syndrome is a specific, identifiable condition with a known genetic cause. Fragile X Syndrome characteristics include poor eye contact, social deficits, poor communications and repetitive behaviors.
There is a great site with EVERYTHING you want to know about this study. You can find it HERE!