	May 1998

History Of SD/Dystonia On Line Support Group

By Anne Brett
In March of 1996, the idea of an on-line Internet Dystonia Chat Support Group was conceived by David Barton of Auckland New Zealand. Larry Craig of Montreal Canada and I were enlisted to assist in the formation of this group. Our goal was to provide a place for those of us with dystonia, to meet and chat; sharing information and giving support to each other in dealing with this frustrating disease.

Our first meeting was April 26, 1996 on the Undernet with four people meeting to chat. Since that time, our group has grown from those original four people to a present membership of over 620 people from around the world, all of whom have some form of dystonia; and, we continue to add more people almost on a daily basis to our group data base. Our membership data base represents dystonia patients from New Zealand, Australia, Canada, all over the U.S., the Netherlands, Ireland, England, Scotland, Ireland, France, Germany, Sweden, Spain, Israel, Brazil, Pakistan, United Arab Emirates, the Philippines, and South America.

Our chat group meets every Wednesday, 8 P.M. EASTERN U.S. Time on the Undernet. Our chat room is listed under the name of #sd. The requirements for joining in on these chat meetings are that one has a computer and has dystonia or a family member who has dystonia. We have easy instructions available for people wishing to join in on our chats, which can be sent by e-mail. For information contact Anne Brett brett@stic.net or David Barton dsbarton@ihug.co.nz This information is also on our web sites.

In January 1997, seeing the need to expand on our goals of providing information on dystonia to our ever growing membership, Larry Craig and I obtained donated web site spaces from our Internet servers. These web pages provide easy access links to the Dystonia Medical Research Foundation, all focal dystonia web sites and any other site that has information on dystonia. If you care to visit our main web site, the URL address is: http://www.geocities.com/HotSprings/5914/

In keeping with our standards of professionalism and integrity on our web sites and maintaining our goals of providing information on dystonia, we felt it would be very beneficial to anyone seeking information, to be able to have access to some of the important articles that have been published on dystonia.. These articles are featured on my web site for approximately two months, enabling those who visit to read, copy and download the information. We know that many doctors in the third world countries are also accessing information from these published articles from my web site, the URL is: http://www.stic.net/users/brett

Dr. Joseph Jankovic (my doctor), graciously donated the first two featured articles for my web site; Tremors and then Treatment of Dystonia with Botulinum Toxin.

Dr. Mitchell Brin graciously donated the third article; Orofaciomandibular and Lingual Dystonia (Meige Syndrome) and Electromyography for Identification of Dystonic Muscles.

Then Dr. Michael Rolnick contributed Double-Blind Controlled Study of Botulinum Toxin in Adductor Spasmodic Dysphonia, and A Method for the Treatment of Abductor Spasmodic Dysphonia With Botulinum Toxin Injections: A Preliminary Report.

Dr. Anthony E. Lang of The Toronto Movement Disorders Centre donated several of his published articles which are presently being featured on my web site: Tizanidine in Cranial Dystonia; The dystonias: experimental, clinical and therapeutic aspects; Psychogenic Dystonia: a Review of 18 cases; and Drug Treatment of Dystonia and Cognitive Processes in Idiopathic Dystonia Therapy: Implications for Treatment Strategies.

We work closely with the Dystonia Medical Research Foundation, the National Spasmodic Dysphonia Association, the National Torticollis Association, and the Benign Essential Blepharospasm Research Foundation in keeping with our goals of linking dystonia patients together on-line and providing easy information access links from our two web sites.

We welcome anyone interested to contact us!

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