A good quick resource, this website offers “fast facts” and information on famous people who have Tourette Syndrome. A site to visit if you want more information but don’t want to wade through a bigger website.
A woman started this site after her own sons were diagnosed with Tourette Syndrome. It is a site unlike many others, as it focuses on the majority of TS sufferers who have mild symptoms. Many websites focus on the “worst case scenario” and ignore that most sufferers will never have such severe symptoms. This would be a good site to visit if your child has just been diagnosed with TS and you want to keep things in perspective. There are many personal stories here, as well as recommended books and sites.
This site is a great place to get reliable information about Tourette Syndrome and its treatments. The association is committed to educating people about TS, and has publications and videos available. You can also find out more about how to get involved – either by helping TSA or by learning more about legislative action and public policy concerning Tourette Syndrome.
A great resource for a variety of disorders, the name stands for “Worldwide Education and Awareness for Movement Disorders.” This site has an incredibly complete glossary, plus information on all the movement disorders. You can even chat or post to the message boards.
A Cursing Brain? The Histories of Tourette Syndrome By Howard I. Kushner
This is a good book for people who want to know more about Tourette Syndrome and how it has been viewed and treated over the past couple of centuries. The author writes from an academic stance: how medicine has classified the disorder, what patients have gone through, and how the sufferer’s culture has viewed the disorder.
Children with Tourette Syndrome: A Parents’ Guide By Tracy Haerle
This is a great first book to buy about Tourette Syndrome. The foreword is written by Jim Eisenreich, a baseball player who was diagnosed with the disorder. The book includes essays written by specialists as well as parents, on the educational, legal, medical, and social issues surrounding TS. Although this book is older (published in 1992), it is a good place to start.
Living with Tourette SyndromeBy Elaine Fantle Shimberg
The author is a parent of boys with Tourette Syndrome, and is a sufferer herself. This means that she has a great perspective to bring to the discussion. Besides giving advice to parents, she also addresses potential problems adults with TS will face: should TS sufferers tell potential employers about their condition? What sort of social life and living situations will be best? A good resource for parents trying to understand their child’s disorder.
The National Organization for Rare Disorders (NORD) 55 Kenosia AvenuePO Box 1968Danbury, CT 06813-1968 203-744-0100800-999-6673 (voicemail only)NORD is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service
Tictionary: A Reference Guide to the World of Tourette Syndrome, Asperger Syndrome, Attention Deficit Hyperactivity Disorder and Obsessive Compulsive Disorder for Parents and ProfessionalsBy Becky Ottinger and Fred C. Engh
One of the authors, Becky Ottinger, actually has a son with TS, ADHD, and OCD. This is a very complete resource book, with fact sheets, handouts for the teachers and staff at your child’s school, and real-life stories.
Tourette Syndrome Association, Inc. 42-40 Bell BoulevardBayside NY 11361-2820Phone #: 718-224-2999800 #: 888-486-8738e-mail: ts@tsa-usa.orgThis site is a great place to get reliable information about Tourette Syndrome and its treatments. The association is committed to educating people about TS, and has publications and videos available.
Tourette Syndrome: The Facts By Mary M. Robertson and Simon Baron-CohenThis is an easy-to-read resource that has not been watered down. It is a good resource for not only the sufferers of TS, but also family and friends of sufferers. There is also a large bibliography if you want to get more information.
WE MOVE (Worldwide Education and Awareness for Movement Disorders)204 West 84th StreetNew York NY 10024Phone #: 212-875-8312800 #: 800-437-6682e-mail: wemove@wemove.orgFind good information about Tourette Syndrome and other movement disorders.
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