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Patient Advocacy Organizations

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.
Benign Essential Blepharospasm Research Foundation Inc.
P.O. Box 12468, Beaumont, Texas 77726-2468
(409) 832-0788 * Fax (409) 832-0890
E-Mail: bebrf@ih2000.net

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.

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.

Subscribe to "Stay Connected, Stay Informed", We Move's news service for patients and their families, at http://www.wemove.org/stayconnected/

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

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.

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.

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.

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.

WE MOVE Welcome to the WE MOVE Web Site, is a comprehensive resource for movement disorder information. This informative website has information on various forms of dystonia, including Spasmodic Torticollis and other movement disorders such as Corticobasil Degeneration, Essential Tremor, Multiple System Atrophy, Parkinson’s Disease, Progressive Supranucular Palsy, Restless Leg Syndrome, Rett Syndrome, Spasicity, Tourette's Syndrome and Wilson Disease.

Medical Information & Online Resources

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.

MEDLINE on the Web Medline has various medical papers written by specialist on specific diseases and illnesses. This is the link for people that are specifically looking for information on Spasmodic Torticollis.

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.

Chat Rooms and Bulletin Boards

EGroups – Congenital Torticollis This is a place for parents and caregivers of children with torticollis to share information and ideas. We hope you will find encouragement and support here from others dealing with torticollis.

* WE MOVE Movement Disorder Discussion Forums This board includes a variety of forums on varying movement disorders for patients and healthcare providers to answer questions and discuss relevant issues.

Social Security & Disability Information

Disability Income Associates Frederick A. Johnson has represented over 1,000 SSA disability claimants over the past 13 years. Over 35 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@socialsecuritydisablty.com or 1-800-536-0454. He is also a ST patient.

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.

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

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.

Infants & Torticollis

National Infant Torticollis Association providing information on infant torticollis, acting within a referral role, and directing patients to appropriate resources.

Kathie's Korner This is the website of Kathie Stehr, RN who volunteers her time by helping others by answering emails for the NSTA. You can learn more about Kathie and find great information on Spasmodic Torticollis and Congenital Torticollis (infants with torticollis).
Kathie is also known for her creative writing. Her poetic styling paints a vivid picture of how it is to live with Spasmodic Torticollis that is truly appreciated by both people with and without the movement disorder. You can view more of her poems and short stories at her website.

Torticollis Kids www.torticolliskids.org