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English version




English Summary
The Tourette Association in Iceland was founded in 1991. Its main objective is to carry out educational activity among the members and out in society, in order to increase awareness of Tourette Syndrome among the public and those in authority.

In 2008 the membership numbers around 250. The Icelandic population numbers around 300,000, of whom about half live in and around the capital, Reykjavík. The members of the Tourette Association include both adults with TS (Tourette Syndrome) and parents of children with TS; the vast majority are parents. The association’s board comprises five people, each elected for a two-year term.

In accord with the association’s objectives, its activities have mainly focused on educational work on all aspects of TS. An Open House for members is held a few times a year, and a newsletter is sent to them about five times a year. One or two information sessions are held each year, at which experts and others address the meeting and ask questions. Courses for parents of TS children and for teachers and carers are held two to three times a year, at which experts provide guidance on various methods which can be helpful in parenting and teaching TS children.  The association sends representatives to schools to provide information on TS, at the request of the school or the parent of a TS child, as various problems may arise in schooling of TS children. Efforts have been made to establish activities for adolescents and adults within the association by forming groups for these age groups, but without real success, perhaps because the association is small. Since 1996 (not the year 2006) the association has sent two to four delegates to the conference of the TSA (Tourette Syndrome Association, Inc.) in the USA, which is held every other year; this has provided the Icelandic association with much helpful information as well as useful books, booklets and videos, and has inspired us to undertake various projects.  

Translation projects of the Tourette Association in Iceland in recent years are as follows:

      


 

  1. Translation of Teaching the Tiger   
    Tígurinn taminn: Handbók fyrir þá sem kenna nemendum með athyglisbrest,
    Tourette heilkenni eða áráttu- og þráhyggjuröskun, an Icelandic translation of Marilyn  Dornbush and Sheryl Pruitt’s book Teaching the Tiger, was published in May 2002.  This is a very valuable book in the teaching and parenting of children with various types of developmental disorder.  An American review of the book says that for teachers and parents of children with  ADHD, TS+ (Tourette Syndrome with associated conditions) and OCD (obsessive-compulsive disorder), this book is an absolute must. The Tourette Association had the book translated and published in Iceland. Various funds, organisations and others sponsored the Icelandic publication.
        

  2. Translation of educational material on Tourette in computerised form.
    Educational material on Tourette in computerised form was brought to Iceland a few years ago by our delegates to a TSA conference in the USA.  This is excellent educational material has been introduced into primary schools and other places. The latest years we have held an information campaign on Tourette in primary/lower secondary schools (age 6 to 16) in which we have used this material. We did e-mail almost all Iceland’s primary/lower secondary schools, and offered them a presentation on the subject. One of our members, who is both a Tourette parent and an MSc in psychology, has carried out such presentations on our behalf as a contractor, in schools which so request. The school or other body which requests a presentation pays the contractor a fee; in cases where they cannot pay for some reason the association pays the contractor’s fee.

  3. Translation of an Anger Management  Book
    A translation of the American book Hot Stuff To Help Kids Chill Out; The Anger Management Book by Jerry Wilde was published in march 2004. To translate, publish and advertise the book did cost ISK450,000 and we got sponsorship for all the cost from the City of Reykjavik and six other municipalities.  
    The name of the book in Icelandic is Ráð handa reiðum krökkum (Advice for Angry Kids).  The book is aimed at children and adolescents, but is worthwhile reading for people of all ages, not least those with Tourette, who often experience impaired control of anger and “Tourette storms.

  4. Translation of Tourette's Syndrome: The Facts
    (Oxford Medical Publications)
    Our translation of TS: the facts, a book by Mary M. Robertson and Simon Baron-Cohen was published in June 2007. This book has explanation of the questions and problems that children with Tourette's syndrome and their families face.  An editoral view says: “This book, written by a psychologist and a psychiatrist who have been researching Tourette's Syndrome for many years, explains the causes of the syndrome, how it is diagnosed, and the ways in which it can be treated. Essential reading for Tourette's sufferers, their relatives and friends, Tourette's Syndrome: The Facts will also be of use to clinicians, GPs, schoolteachers, and anyone seeking an accessible introduction to the disorder.”

  5. Translation of Why Do You Do That?      
    Our translation of Why Do You Do That? was published in december 2007.  This book is for children and young people with foreword by Tim Howard and illustrated by Liz Whallett.   'Youngsters with Tourette Syndrome will find comfort and good humour in this superbly written book by ….. recognized experts in the treatment and scientific research of Tourette Syndrome. Their compassion and deep understanding of their patients and their families are unparalleled.'
    - Judit Ungar, President and Sue Levi-Pearl, VP,
    Medical and Scientific Program, Tourette Syndrome (USA) Association

  6. Now in translation and planned to translate
    Just now we are finalising a translation of Tourette Syndrome - A Practical Guide for Teachers, Parents and Carers, by Amber Carroll and Mary Robertson, and it will be published soon. That book is part of  a series named Resource Materials for Teachers.
    We are also working on getting contract to translate two books for children regarding TS and OCD by Holly Niner: I can’t Stop and Mr.Worry and hope to translate and publish them next summer.

The activities of the Tourette Association in Iceland are financed by means of membership fees and regular annual grants, in addition to grants especially requested from various funds for specific projects. Membership fees amount to about ISK 200,000 a year, and the association also receives the following regular annual grants: a government grant from the parliamentary Budget committee, usually about ISK600,000 per year, and a grant from the Organisation of the Disabled in Iceland (financed by the Icelandic Lotto game) amounting to ISK 1300,000 thousand the latest years, depending upon the revenues of the lottery.  

The association has twice raised money by sponsorship, i.e. when it published an information publication on the association’s tenth anniversary in 2001, and for the publication of the Icelandic version of Teaching the Tiger in 2002. To place these figures in context, in Iceland now a litre of petrol costs about ISK 140, a meal at an average restaurant ISK 2,000, and a glass of beer ISK 500.

Regarding activities of the members of TSA Iceland, the board has seen the recent years that year by year people meet up less and less to attend activities, but more and more they and others (teachers, social services, etc.) seek info from us by calling, sending email or by visiting our website, www.tourette.is  Almost all of our new members the latest years are on our email list.    The personal computer and internet use in Iceland is the highest in the world, around nine out of ten Icelanders aged between 16 to 74 years used computer and internet the year 2006 and so did almost every company. The year 2006 around 84% of Icelandic homes owned a computer and had connection to the internet.

In spring or summer 2008 TSA Iceland will send 4 representatives to London, England, to visit the Maudsley hospital there. We will send our chair on board along with three specialists who all are working with children and adolescents at the University Hospital of Iceland, Landspítali háskólasjúkrahús (LSH), to visit Maudsley Hospital/Institute of Psychiatry in London, TS department, and the nearby OCD chlinique to see how they build up programs, e.g. in diagnosing, treating and educating/supporting this group of patients, their parents and schools.


This is a broad summary of what the Tourette Association in Iceland stands for, has been doing, is doing now or planning to do in near future.



Mrs.  Sigrún Gunnarsdóttir,  
President of the Tourette Association in Iceland


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  tourette@tourette.is

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