Through this blog I have managed to find a lot of people who are living with RS. Either themselves, their child or someone they love. I LOVE the fact that the internet can be such an amazing tool to connect people who would otherwise never find each other. I am hoping in the coming months to form some kind of coalition or foundation for RS. I am doing the research now but it is a lot of work.
The first step of my process is to find potential members. You do not need to have RS to be a member you just need to know someone who does. What I would like to do is create a database of information for this group. What I am hoping is for my readers who are dealing with RS will e-mail me (If you click View Profile under About Me you will be able to access my e-mail). You can leave whatever information you feel comfortable leaving. So far in my database are columns for name, child's name, child's age, e-mail, phone number, where you live (you can be as vague or specific as you feel comfortable with), cognitive, fine motor, gross motor and medical status and any notes you want to share. I vow that the information will never be given away or used for any other purpose than helping us all learn from each other.
Thanks and I will keep you all posted on my progress!