This is REALLY important news for those of us who have kids with RS, because it is quite a rare condition (well, at least it's been rarely diagnosed up to this point, which isn't really the same thing, but more on that later).
Two mothers of children with RS, Cassandra and Sarah, have put together a website, called Rooms of Jade, for any and all who may be interested in RS. There is a forum where we can go to discuss issues or ask questions, plus pages with links to personal blogs of kids with RS, information about RS and the associated syndrome, Gomez-Lopez-Hernandez Syndrome, etc.
If you have a child with RS, OR if you are an adult who has RS, I would encourage you to visit this site and register for the forum. Sarah is compiling a very informative spreadsheet with characteristics of each person with RS so that we can attempt to figure out which characteristics are shared by all or most, and which are not. This is very important because there is so little information out there right now. Doctors know very little about this condition and the implications for our children as they grow.
So please contact Sarah if your child has RS and help us all by sending her information about your child. We are not making this spreadsheet public, only the results are public.
3 comments:
I'm so happy and excited for your new support group. I went and checked it out. I think it is just wonderful! Such beautiful and inspiring children. What a great way to connect and share information. Makes me wanna go start a support group. I only wish I had the time...
Hi Keri!
Yes, it's a big step forward for the RS community, which is small but growing. We really needed something like that.
Rooms of Jade forum and support group have been moved to http://kindridfoundation.com/ . If anyone needs a password reset just email me. We have now a foundation to hopefully help fund research for Rhombencephalosynapsis.
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