An Online Survey to Explore Users' Experiences of Participation In

1 Title of Study: An online survey to explore users’ experiences of participation in online communities for Tourette syndrome and Tic disorders. Name of Researcher: Victoria Perkins ([email protected]), MSc Health Psychology student, The University of Nottingham Supervisors: Dr Bethan Davies (Research Fellow, School of Medicine, University of Nottingham: [email protected]) and Professor Neil Coulson (Professor of Health Psychology, School of Medicine, University of Nottingham: [email protected]) Tourette syndrome/tic disorder organisations and groups If you feel you require further support, there are a number of Tourette syndrome/tic disorder organisations and groups across the world that provide support for people living with Tourette syndrome and tics, and their families – click the hyperlink to access their website, or search them online: Argentina - Tourette Syndrome Association of Argentina Australia - Tourette Syndrome Association of Australia Austria - Tourette Selbsthilfe Österreich Belgium - Iktic Tourettevereniging België Canada - Tourette Canada Caribbean Islands - Caribbean Tourette Syndrome Support Group Hong Kong - The Hong Kong Tourette Association Czech Republic - ATOS - Touretteův syndrom Denmark - Dansk Tourette Forening Finland - Tervetuloa Suomen Tourette France - Association Francaise du Syndrome de Gilles de la Tourette (AFSGT) Germany - Tourette-Gesellschaft Deutschland e.V. Iceland – Tourette samtokin a Islandi Ireland - Tourette Alliance Italy - l’Associazione Italiana Sindrome di Tourette e disturbi correlati (A.I.S.T.) and Tourette Roma Japan -Tourette Syndrome Association of Japan Netherlands - Stichting Gilles de la Tourette New Zealand - Tourettes Association of New Zealand Norway - Nasjonalt Kompetansesenter for AD/HD, Tourettes Syndrom og Narkolepsi Norway - Norsk Tourette Forening Philippines - Philippine Tourette Syndrome Association Poland - Polskie Stowarzyszenie Syndrom Tourette'A Portugal - Associação Portuguesa de Síndrome de Tourette Sweden - Riksförbundet Attention Switzerland - Tourette Gesellschaft Schweiz Turkey - Türkiye Tik/Tourette Sendromu Gönüllüleri 2 United Kingdom - Tourettes Action works in England, Wales and Northern Ireland and is the leading support and research charity for people with Tourette Syndrome and their families. o Scotland - Tourette Scotland o Northern Ireland - Tourette Alliance USA - Tourette Association of America .

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TC Newsletter – June Edition
JUNE 4, 2018 National Newsletter June 2018 NATIONAL EVENTS TS Edmonton 10 Things You Didn’t other people’s rights (e.g., Family being aggressive, bullying, Event - Know About Tourette damaging property on Sunday Syndrome purpose, stealing, breaking June 10th serious rules). Conduct Bronx Bowl 12940-127 St. 1. Only 10% of the disorder, according to this West, Edmonton, AB people with TS have no study, can occur in people with other associated TS but this is related to the Winnipeg disorders. This is called presence of ADHD and a family Chapter pure-TS or TS-only. history of aggressive and Event - violent behaviour. Picnic in the Park 2. Though rare, some people with TS have a palatal tic. June 10th This tic involves the soft palate moving 8. Depression, which is Assinboine Park Winnipeg, common among people with while simultaneously hearing a clicking sound. Manitoba TS, is a lifetime risk for 10% of FREE to Attend -but RSVP 3. While TS is genetic and occurs across all cultures, people with TS. Depending on REQUIRED by: June 6, 2018 some differences have been noted between cultures with the study, between 2-9% of RSVP via EMAIL to: regard to certain accompanying conditions like anxiety, people with TS have [email protected] include # of people depression, LD, impulse control, aggression, ODD, and depression. attending. conduct disorder. 9. Some people with TS can have retching or vomiting tics. Shine a Light on Tourette 4. Coprolalia (socially inappropriate language) and Syndrome- copropraxia (socially inappropriate movement or Niagara Falls gestures) are not unique to Tourette Syndrome.
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COORDINATOR TOOLKIT 2017 2 Table of Contents 4 A Word from the Chair 5 Your Support Network 6 Introduction to the Trek 7 Talking Points 8 What is the Trek? 9 Trek kick off 10 The Starting Line and Beyond 12 Volunteer Engagement 14 Promotion 18 Prizes and Giveaways 21 Online Giving Software – Making a donation 27 Online Giving Software – Registering to Trek 32 Administration 33 Incentives for affiliates 34 Operational Budget & Shipments 35 Event Execution 36 Coordinator Supply Checklist 37 Suggested Planning Timelines 38 Suggestions to grow your Trek 39 Tourette Canada Fact Sheet 40 Master Item Checklist 41 Planning Checklists 48 My Notes 3 Additional info (available on www.tourette.ca) Question & Answer Flyer Pledge Form Waiver and Release (English & French) Media Release – National Kick Off Online Giving Software – How to make a donation Online Giving Software – Registering to Trek Additional info (available on Dropbox) Donation Letter Template (English & French) In Kind letter Request Sponsorship Request Letter Template General Introduction Letter Media Release – Local Trek How to hold a school Trek Sponsor Thank you letter Trek Letterhead Trek Logos, digital banners (English & French) Tourette Canada Expense Form Template Radio Stations & Newspapers List (By Community) Coordinator files for meetings, minutes, agenda, logistics, etc 4 A Message of Thanks For 40 years, Tourette Canada has been dedicated to improving the lives of Canadians living with Tourette Syndrome (TS) and its associated disorders. Our organization relies on the generosity of the community to support our ongoing efforts to realize our Vision – to achieve an empowered Tourette community in an inclusive Canada.
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Parent's Guide to Cbit
Basic Concepts of CBIT - Comprehensive Behavior Intervention for Tics By Steve Pally Volunteer Administrator, Tourette Canada Information & Support Forum www.TouretteSyndrome.ca www.Tourette.ca Volunteer Moderator, Tourettes Action Information & Support Forum http://forum.tourettes-action.org.uk/ www.tourettes-action.org.uk/ Providing Tools For Life CBIT (pronounced see-bit) combines six strategic therapeutic components in the form of a clinically proven comprehensive non-medication therapy to help a child (person) with Tourette Syndrome manage their tics. Behavioral Therapy Behavioral therapy is a treatment that teaches people with TS ways to manage their tics. Behavioral therapy is not a cure for tics. However, it can help reduce the number of tics, the severity of tics, the impact of tics, or a combination of all of these. It is important to understand that even though behavioral therapies might help reduce the severity of tics, this does not mean that tics are just psychological or that anyone with tics should be able to control them.2 Habit Reversal Habit reversal is one of the most studied behavioral interventions for people with tics1. It has two main parts: awareness training and competing response training. In the awareness training part, people identify each tic out loud. In the competing response part, people learn to do a new behavior that cannot happen at the same time as the tic. For example, if the person with TS has a tic that involves head rubbing, a new behavior might be for that person to place his or her hands on his or her knees, or to cross his or her arms so that the head rubbing cannot take place.2 Overview Tourette tics are involuntary, but can be influenced by internal and external factors such as stress, fatigue, excitement; the reactions of others to one's tics; either actions or reactions that are consequences or antecedents to tics being expressed.
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Do Maternal/Paternal Child Relationships Have a Similar Pattern When the Child Has Tourette's Syndrome? a Case Study
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Note to Users
NOTE TO USERS This reproduction is the best copy available. Université d'Ottawa University of Ottawa Nicotine & Tourette Syndrome I Clinical and Attentional Effects of Acute Nicotine Treatment in Tourette Syndrome Anne L. Howson, B.A., M.B.A. A dissertation submitted to the School of Graduate and Postdoctoral Studies of the University of Ottawa as partial filfilment of the requirements for the degree of Doctor of Philosophy Dissertation Supervisor: Vemer J. Knott, D.Phi1. Ottawa, Canada, 2000 0 Anie L. Houson, Ottawa, Canada, 2001 National Library Bibliothèque nationale du Canada Acquisitions and Acquisitions et Bibliographie Services services bibliographiques 395 WeMington Street 385, nre Wellington OltawaON K1AOFU ûüawaûN K1AW CanadB cenada The author has granted a non- L'auteur a accordé une licence non exclusive licence allowing the exclusive permettant à la National Library of Canada to Bibliothèque nationale du Canada de reproduce, loan, distn'bute or sell reproduire, prêter, distribuer ou copies of this thesis in microform, vendre des copies de cette thèse sous paper or electronic formats. la forme de microfiche/film, de reproduction sur papier ou sur format électronique. The author retains ownership of the L'auteur conserve la propriété du copyright in this thesis. Neither the droit d'auteur qui protège cette thèse. thesis nor substantial extracts fiom it Ni la thèse ni des extraits substantiels may be printed or otherwise de celle-ci ne doivent être imprimes reproduced without the author' s ou autrement reproduits sans son permission. autorisation. Nicotine & Tourette Syndrome t Acknowledgements Professiondly, 1 would like to thank my thesis supenisor, Vemer Kaott, for welcoming rny ideas and helping to create a research projec t that was interesthg and rewarding for us both.
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Freely available online Reviews How Much Do We Know about Adult-onset Primary Tics? Prevalence, Epidemiology, and Clinical Features * Daphne Robakis Department of Neurology, Yale School of Medicine, Yale University, New Haven, CT, USA Abstract Background: Tic disorders are generally considered to be of pediatric onset; however, reports of adult-onset tics exist in the literature. Tics can be categorizedas either primary or secondary, with the latter being the larger group in adults. Primary or idiopathic tics that arise in adulthood make up a subset of tic disorders whose epidemiologic and clinical features have not been well delineated. Methods: Articles to be included in this review were identified by searching PubMed, SCOPUS, and Web of Science using the terms adult- and late-onset tics, which resulted in 120 unique articles. Duplicates were removed. Citing references were identified using Google Scholar; all references were reviewed for relevance. Results: The epidemiologic characteristics, clinical phenomenology, and optimal treatment of adult-onset tics have not been ascertained. Twenty-six patients with adult-onset, primary tics were identified from prior case reports. The frequency of psychiatric comorbidities may be lower in adults than in children, and obsessive compulsive disorder was the most common comorbidity. Adult-onset primary tics tend to wax and wane, occur predominantly in males, are often both motor and phonic in the same individual, and are characterized by a poor response to treatment. Discussion: We know little about adult-onset tic disorders, particularly ones without a secondary association or cause. They are not common, and from the limited data available, appear to share some but not all features with childhood tics.
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Tourette Canada's Magazine Summer 2017
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