Tourettes Action

Support for Young People with TS

Children with Tourette Syndrome are often acutely isolated by their condition, paralysingly self-conscious and deeply ashamed of their involuntary actions. To build their self confidence, make it easier for them to feel included at school and to find friends, we wish to run a series of events for different age groups, where they can meet ‘someone like me’ in a friendly and supportive atmosphere.

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Registered Charity in England and Wales (1003317)




  • Education/Training/EmploymentEducation/Training/Employment
  • Human Rights/AdvocacyHuman Rights/Advocacy


  • Children (3-18)Children (3-18)
  • Young People (18-30)Young People (18-30)



Following a request from a child with Tourettes, we ran our first children’s party in 2007 which was hugely successful. Fifteen children came with their parents. It is a measure of need that three families travelled over 100 miles so their child could attend. These are the boys and girls who may never be invited to another child’s party throughout their schooldays. We are repeating the party in 2008 for more children at a bigger venue. In September 2008, we held a pilot residential Tourettes Adventure Camp for 11 teenagers. Afterwards one said, "I found that I could do much more than I thought I could do" and "I think that I will be more confident with my Tourettes." These were exactly the outcomes we had hoped for. We will hold another Tourettes Camp with the Scouts in 2009 and 2010. Parents reporting on the success of our special children’s programme at the family conference told us: "In the car on the way home, Dan talked about his ‘new friends’ and their families: “‘Will does this ... Phil's mum says that ....". It's just marvellous for him to have met so many kids with TS in such a positive environment. I have had a few tears, just with the relief of it all, for him." "It has made a huge difference to Ellie knowing that there are other children with the same problem." [all names have been changed] We want to expand these successful pilots into a comprehensive programme which will be accessible through our regional network of support groups. We're looking for funding to cover the following costs: £10,000 for 8 regional parties for 20 children each, including venue hire, professional entertainer, party food and bags, volunteer expenses and training packs, £ 15,000 for 2 residential Adventure Camps for a dozen teenagers £7,000 for a special ‘kids’ rooms’ and ‘teens room’ staffed by Special Needs teachers or professional youth workers, at 4 regional conferences £5,000 for a self-management toolkit, online and print options. We have an adult version which is our most valued service after the Helpline. Young people in transition have specialised information needs relating, for example to the switch from paediatric services, driving, further education, starting work