Anyone out there know that they are a carrier of the fragile x gene and would like to just share information?

what do the rabbonim say about cvs testing ?

I agree that each person has to ask their individual questions to their rav. It is definitely not a black and white issue. I have heard that there are some rabbanim that say it's ok. The Rav that I spoke to doesn't think it is the best option because it can't be done early enough if someone would want to abort as a result of it. This would have to be within the first 40 days of pregnancy. As I said this is the Rav that I spoke to who answers for me. I do know that there are other Rabbanim that say otherwise. I don't know how much you have looked into this, but IVF with PGD are options that are more widely accepted. If you would like more information on this I can tell you were to look it up so you can ask your Rav. Hatzlacha

i don't know names of rabbanim that say it's ok. but i can get that information. as soon as i know i will post it. i actually don't know if they say cvs is ok or amneocentesis ( a simular process that can be done a lot earlier than cvs.) cvs can be done at about 16 weeks but amneocentesis can be done as early as 8 weeks i believe. a great site/place to find out this info is on this site http://www.reproductivegenetics.com/. they are located in chicago and are one of the top places that deal w/ these issues and do the procedures involved. I have spoken to them on the phone as well and they have been very helpful.

First, it's a CVS and not an Amniocentesis that can be done early in pregnancy.
I beleive R' Fischel Hershkowitz (Klosenburger Dayan) and R' Avruhm Leitner deal with these sheiles, but don't quote me for that, you'll have to look into it yourself first. You can also ask Rabbi Ekstein from Dor Yesurim to refer you to a Rav.
I would also recommend you read up on the risks involved with CVS, especially when it's done very early in pregnancy (which would have to be the case, so that an abortion would be able to take place before the fetus reaches forty days).
Also, in the case of a twin pregnancy I was told, a CVS wouldn't be available, since they would have to inject dye, as not to sample the same fetus twice, and that can only be done with and Amniocentesis. Although, I'm not sure if it holds true in every center.
Another point to consider, even if you'll get a heter for abortion, it will probably only include an affected boy. It's very unlikely that any Rav will approve aborting a carrier girl as well. As with PGD (preimplantation genetic diagnosis) in the case of an IVF, it's likely not as complicated to get a heter for eliminating a girl who carries the mutaion.
Lot's of hatzluchah, and if you have any more questions, I'll be eager to try to answer them for you. I researched allot and know much on this subject.

"IVF HAS NEVER BEEN SUCCESSFUL WITH FRAGILE X. "
I don't know if you meant to write that, but it is an untrue statement. I am not married yet so i am not experienced yet, but i am a carrier of fragile x and have spoken to many professionals in the feild and IVF along with PGD has certainly been successful in eliminating fragile x. I may have misunderstood what you said so if i did, please clarify.

i see that you wrote on here awhile ago but im wondering if i can get in touch with you? i am a fragile-x carrier as well

u pm'ed me ? what does that mean? u im'ed me?

anyone here who's a carrier of fragile-x and have done ivf with pgd?

depends why you need to talk to Rav. - some rabbonim are experts in certain things..

you can pm me if you do not wish to post in pulic.