Spasmodic Torticollis / Dystonia

Last updated: March 2, 2015

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  • Action for Dystonia, Diagnosis, Education & Research (ADDER) A.D.D.E.R. was formed in 1999 out of the North East branch of The Dystonia Society, which had been running since it was started ten years previously. The name A.D.D.E.R., which stands for Action for Dystonia, Diagnosis, Education and Research, was dreamt up by John Whitaker, our own Outreach Dystonia Nurse Practitioner, because A.D.D.E.R. is a snake which suddenly strikes out of the blue, which is a bit like dystonia. One minute you are fine and the next you have this irritating and annoying muscle spasm, in your neck or face or wherever, which will not go away. Dystonia is a rare neurological movement disorder which causes involuntary and prolonged muscle contractions. Dystonia can appear in any muscle group in the body and can be extremely painful and debilitating. [United Kingdom]
  • Dystonia Medical Research Foundation (DMRF) Since 1976, the DMRF has grown from a small family-based foundation into a dynamic membership-driven organization led by a Board of Directors and network of volunteers with personal connections to dystonia. Because dystonia hits so close to home for our directors and volunteers, the DMRF leadership is motivated by an unrelenting drive to find a cure and an unwavering commitment to serving people affected by dystonia.
  • MedlinePlus: Dystonia MedlinePlus is a service of the U.S. National Library of Medicine (NLM), National Institutes of Health (NIH). Dystonia is a movement disorder that causes involuntary contractions of your muscles. These contractions result in twisting and repetitive movements. Sometimes they are painful. Dystonia can affect just one muscle, a group of muscles or all of your muscles. Symptoms can include tremors, voice problems or a dragging foot. Symptoms often start in childhood. They can also start in the late teens or early adulthood. Some cases worsen over time. Others are mild.
  • National Spasmodic Torticollis Association Inc. (NSTA) The mission of the National Spasmodic Torticollis Association is to support the needs and well being of affected individuals and families; to promote awareness and education; to advance research for more treatments and ultimately a cure.
  • Spasmodic Torticollis / Dystonia Inc. ST/Dystonia was incorporated in 1989, becoming a non-profit 501(c) 3 organization in 1990 and has been dedicated to helping people with Spasmodic Torticollis (ST) ever since. In this site, you will find the testimonials of others who have been helped; you will find the many benefits we offer you; you will find our “Treatment Center” offering you the major treatments available for you. Just a few years ago not much was available. The advances have been fairly dramatic, however, in what can help you today. It's no longer just oral meds but there is now botox, myobloc, the Selective Denervation Surgery and, coming along fast, the Deep Brain Stimulation (DBS) Operation. And we're here to help advise you of these various treatments.
  • Spasmodic Torticollis Recovery Clinic, Inc. S.T.R.C. provides natural, non-medical, individualized education and therapy for people suffering with Spasmodic Torticollis/Cervical Dystonia globally (ST/CD).
  • The Dystonia Society The Dystonia Society was established in 1983 by a small group of people affected by dystonia, with the support of the late Professor David Marsden. The Society was established to promote the welfare of people who are affected by any form of the neurological movement disorder known as dystonia. The Society aims to do this by promoting awareness of the disorder, by supporting research and by undertaking welfare initiatives. It does this on a national level and through its network of local support groups. [United Kingdom]