Fragile X Syndrome Support Group

Michele Mazzocco at the Kennedy Krieger institute at Johns Hopkins works with girls with Fragile X. Also, Vicki Sudhalter at the Staten Island Institute for Basic Research is a good source of information about girls and Fragile X.Brenda Finuccane at Elwyn in Philadelphia is a good resource too.

There is a free pamphlet on girls with fragile X that you can order on nfxf.org. I have an 8 year old daughter with fxs and I order one every year to give to her teachers.

Briefly I would like to add that I think it should be routine to add fragile X testing for females whenever there is a concern of developmental delay or mental retardation. One thing to keep in mind is female performance levels are often higher than males.

Dr. J

I have Fxs. :)

I'm just now beginning to learn about my son's diagnosis. He's four years old. Where were you able to find information on how Fragile X shows itself in boys?

Hi, my two sisters who both have Fragile X were part of a test study at Johns Hopkins. Actually, the doctor mentioned might be the same MD at the Kennedy Institute.

I just shared my story on my blog about my sisters and their struggle with Fragile X. I've included a lot of information on here that might be helpful about Fragile X in females. Feel free to contact me if you need further information. Best of luck to you!

Here's the information about Fragile X in regards to my sisters' story.
Hope this helps!

http://buzz.prevention.com/communi...