If you’re in the eastern Massachusetts area I’d love to invite you to check out a brand new resource group for families affected by fragile X syndrome! There is a short form at the bottom of the page where you can sign up to receive updates from the group and if you want to help get the group up and running you can make that known as well!
Yay! I was just going to send an email to Sharyn and the National Fragile X Foundation about assistance in getting this going. Can they each send out an email about it to appropriate folks? Thanks so much for doing this!
National will be sending out a large mass mailing which will go by e-mail and snail mail to all the contacts in their database in a given geographic area. A short survey will be included to begin to get an idea of what the families in the area want/need in a group. The clinic may also be sending it out to their contacts as well, Sharyn is just confirming if they are allowed to do that or if there are any restrictions.
It’s really exciting!