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/communit...

i have fx... im new to this whole thing and i dont know much about this disorder yet i know that i dont wash my fave stuffed animal bc i want it to smell like me is this weird?

I am one of three sisters and we are all carriers who are affected. I went through menopause or ovarian failure due to FX and had a hysterectomy last year.

I wish it was part of a normal screening test as it would've saved me years of heartache.

I can only speak as to how it's affected us sisters but we are all great at english and reading and horrible at math - which is apparently common in FX.

One of my sisters had a son (who is severely affected) and she is now having ovarian problems.

The more we learn about FX the more we seem to learn about where certain behaviors come from.