Welcome to Our New Website

Posted on February 6th, 2010 at 4:11pm under Updates

WELCOME to our new, streamlined and up-to-date website. We have reformulated our website to guide you through comprehensive dystonia symptoms, effects, treatments, botulinum toxin, surgical interventions, prose, books about dystonia, awareness tools, media attention and much more. Feel free to send us suggestions, ideas and feedback. We welcome all your comments.

UPDATES

  • A new organization has formed at www.dystonia.us . Do you know where your money is going? How are donations truly being distributed towards dystonia and a cure?
  • Dystonia Cycling Across America Tour- Meet Kathy online.
  • Submit your Dystonia Video to www.neurofilmfestival.com.
  • DBS Hits The Today Show ! Feb 3rd 2010.
  • A new book is available, The Dystonia Patient, by Dr. Michel Okun, MD at Amazon.com.
  • There are multiple clinical trials involving various forms of dystonia located at www.clinicaltrials.gov. Participate and create change in all forms of dystonia. Let’s not tunnel vision ourselves with only DYT1 torsion protein research. Let’s expand into care, quality of life and accurate epidemiology numbers!

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  • Join our Dystonia Ed Forum today. Receive answers to your questions today. The ONLY forum moderated by an active healthcare provider, who herself has dystonia and underwent DBS in 2004, with the aid of several dystonia activists. We have close to 300 active members. Come, Share and Join.
  • New FDA warnings about botulinum toxin use. Go to www.allergan.com or www.solsticeneuro.com.
  • How many visitors have we had to our website since Jan 1, 2010 ? Find out on the page Our Work and Who We Are!
  • Need Help with SSI? Contact Nancy, our West Coast Regional Director, at NMuller406@aol.com.
  • New! A new website focusing on the use of Reglan can be found at www.tardivedyskinesia.com.
  • Press Releases have gone out by the law firm of Akin and Smith about a civil rights lawsuit taken against a major NYC medical center for violation of the American Disabilities Act Accomodation Request Process involving dystonia and deep brain stimulation.

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  • Our “Avoidable Medication List” is on Our Publications page.
  • NEW!  Drug Information - DrugWatch.com is a comprehensive resource featuring information on the drug side effects of various medications, including prescription and over-the-counter drugs.

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       Site Updated : 7 Feb 2010.