National Spasmodic Torticollis Association

welcome to our website

NATIONAL SPASMODIC TORTICOLLIS ASSOCIATION

OUR MISSION 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.

Organizations that Provide Information and Support

Benign Essential Belpharospasm Research Foundation Inc. Undertakes, promotes, develops and carries on the search for the cause and a cure for benign essential blepharospasm and other related disorders and infirmities of the facial musculature.
visit website

Care 4 Dystonia An educational non-profit organization committed to increasing the awareness of dystonia, the quality and standards of care, and broaden the distribution of research funding.
visit website

Dystonia Medical Research Foundation (DMRF) Founded in 1976, the mission of the Dystonia Medical Research Foundation is three-fold: to advance research for more effective treatments and ultimately a cure, to promote awareness and education, and to support the needs and well being of affected individuals and families.
visit website

International Essential Tremor Foundation A worldwide support and information resource for people diagnosed with essential tremor.
visit website

National Spasmodic Dysphonia Association The organization provides support to Spasmodic Dysphonia patients through formal support groups, activities, and periodic newsletters. NSDA is dedicated to research, awareness, and support.
visit website

National Organization for Rare Disorders (NORD) A unique federation of more than 140 not-for-profit voluntary health organizations serving people with rare disorders and disabilities. Thousands of affected individuals and their families--as well as support groups, health care and human service professionals, and advocates for people with rare disorders and disabilities--rely on NORD's assistance and leadership. NORD is a charity and continues its mission through the kindness and generosity of its donors.
visit website

Tardive Dyskinesia Center An organization that provides educational information on Tardive Dyskinesia (TD). TD is a result of damage to the bodily systems that process dopamine, and is typically caused by exposure to certain neurological medications - including Reglan. The symptoms of TD, which are irreversible and incurable, mimic those of Parkinson's disease. Tardive Dyskinesia victims suffer from involuntary, repetitive movements which often continue after the drug is no longer used.
visit website

The Bachmann-Strauss Dystonia & Parkinson Foundation, Inc. A non-profit organization that supports patients, family members, researchers, clinicians and volunteers working in partnership to find better medical treatments and a cure for dystonia and Parkinson's disease.
visit website

The Dystonia Society The Dystonia Society is a UK-wide charity providing support, advice and information for anyone affected by the neurological movement disorder known as dystonia.
visit website

Tremor Action Network A non-profit organization whose mission is to spread the awareness of Essential Tremor by advocating for a cure through research. The Tremor Action Network educates the public about the million children and adults afflicted with Essential Tremor.
visit website

 

Medical Information & Online Resources

Botoxmedical.com Learn about medical uses of BOTOX® (onabotulinumtoxinA), a treatment for cervical dystonia (neck pain & muscle spasms), blepharospasm (eye twitching), strabismus (cross eyed).
visit website

ClinicalTrials.gov Provides patients, family members and members of the public easy and free information on clinical studies on a wide range of diseases and conditions.
visit website

PubMed - National Library of Medicine PubMed is the National Library of Medicine's search service that provides access to over 11 million citations in MEDLINE, PreMEDLINE, and other related databases, with links to participating online journals. Simply type Spasmodic Torticollis on the Search bar for information.
visit website

Social Security & Disability Information

Disability Income Associates Frederick A. Johnson has represented over 1,000 SSA disability claimants over the past 13 years. Over 78 of these have been Torticollis patients. He has won benefits for all of his ST clients. He is the author of "How To Apply for and Win Social Security Administration Disability Benefits," which has been lauded by both practicing attorneys and non-attorneys. Mr. Johnson can be reached at fred@ssdwin.com or 1-800-536-0454. He is also a ST patient.
visit website

Disability Resources, Inc. Disability Resources, Inc. is a national, non profit organization, based on Long Island, New York, which has provided information about resources for independent living since the inception of its award-winning print newsletter, Disability Resources Monthly, in 1993.
visit website

Social Security Administration This is a direct link to the government website for information on Social Security Disability.
visit website

SOAR, Searchable Online Accommodation Resource A functional limitation is an activity associated with employment that a person with a disability may have difficulty performing or be unable to perform because of a disability.
visit website

Infants & Torticollis

Torticollis Kids Another good site organized by concerned parents who want to help others.
visit website

back to top