There are three main organizations that are indeed a friend to anyone who has any form of dystonia. As the ST’rs NEWS MAGAZINE headlines on their magazine, “Providing Hope for your future” stands out. Howard Thiel, the director, is also a victim of the disease. He certainly understands. I’ve called him several times and he is very emphathetic to our needs.
E-Mail Howard at www.spasmodictorticollis.org or e-mail the information line at info @spasmdictorticollis.org. The Phone numbers are: 262-560-0534; toll free 888-445-4588; and the fax is 262-560-9535.
Howard has promoted my dystonia books (“Learning, Coping, Living”) many times within his magazine. But, like every other organization, I have felt something was missing. I only recently learned that children get dystonia, too. How sad. No one likes to see a child suffer. That’s why I’ve changed my writing by doing a children’s book called, “The Talking Baseball”. It comes with an electronic talking baseball making it more a book and a game. I have it on my website under “The Talking Baseball.com” within You Tube. I hope Howard will take a look at it and see how much my book can be of help to our children. They need an escape from their pain for even a little while, just as we do. Buy the book and give it to one of these children. It can be purchased either on the link from www.spasmodictorticollis.org or from “The Talking Baseball.com off of my web site. Read the instructions when you enter You-Tube.
One other comment, I have decided to donate a percentage of all my book sales to be divided among all three agencies. The more books sold, the more I can give and the more research will take place, helping us all. Even though times are tough now, do you best to contribute, also. It will be so appreciated.
Information & Helpful Links
