I think it’d be a neat idea to share stories and get to know each other. I realize that most people on this website are parents, however my 4 year old cousin has Fragile X Syndrome. I have helped raise him and I feel it’s very important for all of us to be able to talk about this. I was also wondering, if anyone knows of any good places to support Fragile X Syndrome…with bumper stickers, jewelry, etc. I am not finding a lot of places so if anyone could help that’d be great.
I haven’t seen anything like that. There’s the Autism puzzle piece, but I’ve never seen any Fragile X stuff. Maybe there isn’t any? Maybe we should make some? FX isn’t well known at all, and I think it should be. I have been wanting to find a way to raise awareness, and also money for research and development. I makes me mad that FX doesn’t seem to get much attention outside the “FX community”, and therefore doesn’t get as much funding. Bumper stickers are a good way to start bringing it to everyone else’s attention, and also raise money for R & D. I would also like to know if anyone else has found anything like this.
Go to FRAXA they have items to purchase for Fragile X. I have a giant X on
my car from them. They also have rubber wristbands that have fragile x on
it.
-----Original Message-----
From: jessimily [mailto:fragilex-cpt6267@lists.careplace.com]
Sent: Wednesday, October 10, 2007 8:32 PM
To: thewagner.family@verizon.net
Subject: Re: [fragilex] All Family Members of Fragile X or Autism
Hi,
I have been with the Fragile X group in St.Louis for a couple of years now. You can find lots of information if you sign up on google and type the word fragile x that you want any information on. I get something daily.
Also, I do have the Fragile X car magnet. You also can order T shirts. I have one that says “Got Fragile X”, one of the groups sold cookbooks as a fund raiser, they might be there at the fragile x (FRAXA ) site.
I am a grandma, carrier to a grandson with full mutation. You all are so great about wanting to know more, what areas are needed to help your child. I remember when my grandson was first tested, start school. Yes, do not let your guard down, that “No child left behind” law is for our kids. My grandson is in 1st grade with a full time aide, in a regular classroom. Pulled out for OT, etc. He does really well with the other kids. That is one thing about our kids, they are so loving and share with others so well. My grandson has fragile x and high functioning autism. He sight reads words, is just starting to want to draw, etc. His vocabulary is great. He loves the computer, his game boy and swims in the special olympics.
As I have 3 sisters that are also carriers ( we call each other the fraggie girls ), and between them and my brother, my grandson is the first out of all the grandkids/greatgrandkids who has full mutation. there are 47 of them.
One of my nieces is pregant with twins ( My father was a twin and we think it came from his side of the family). I have only gotten a couple of cousins to be tested as I am sure there are others out there like mine, the family did not want to talk about depression, etc. We now have found out that my grandmother was in and out of the hospital years ago for depression. Had an aunt who basically was in a home for mental impairment.
I encourage any of you, if you can get the family to react or be tested, it helps the doctors and researchers. Our family is in a study with Emory University ( they are so great!!!). UC Davis/ The Mind Institute is another one who wants family to participate. My daughter and grandson have participated at the Kennedy Kreigher Institute also. Lots of places to get more information and actually help you too. You would be surprised at the information and knowledge you can get and jump start working with your child.
Good luck to you all. Our group here in St.Louis will be having the National Conference in July 2008. Parents are invited to attend, please find if you have time and want to participate, send me your email or respond and I can get more info to you. Or if you are attending, please ask for me as I will be helping at the conference.
Thank you all for your input. I checked out some of the places already. I am really thinking about trying to start a group that can help raise awareness and inform people about Fragile X, because obviously there are children who haven’t been diagnosed yet, and perhaps if people are aware of fragile x and their symptoms they may realize that their child should be checked for it. I am going to look into it, I will update with any information that I find. If anyone else is interested in helping me with this, I’d appreciate it, the best way to contact me is through my e-mail Hewitr10@uwosh.edu
Thanks,
Rachele