I am a grandma. Myself and 3 sisters are carriers. so is my daughter and one niece. My grandson is the only one that we know of that is full mutation.
St.Louis is hosting the National Fragile X conference next July. This will be my first one to attend. Though, I belong to a wonderful group of parents who work very hard raising money to host this event. We have done our first walk, done mouse races, casino nights and other things to help.
We have known for a couple of years now, and believe me there are alot of places to get information from. We have a family study at Emory University and plan to do a study at the Mind Institute.
Not only our kids but they are finding now that carriers are showing up with the same disorders like fibromyalgia; thyroid disease and atrophy. That is why being in a study helps all of us to share.
I also signed up on google and out in fragile x. Almost everyday I get something new.
Please contact me if you have any questions.