Supporting TEENfest for young people with Tourette Syndrome – UK

Charity:
Tourettes Action

in partnership with: Tourettes Action

Country

UK

Start Year:

2023

Run Time:

1 Year

Participant Age:

14-17

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What is Co-Funding?

Co-funding with the ALMT allows individuals, other Trusts and Foundations, and Companies to contribute funds directly to individual, vetted and approved, project partnerships. With fifteen years of experience awarding grants and working in partnership with children’s organisations around the world, the ALMT is best placed to support you in your philanthropy.

Tourette Syndrome (TS) is a complex inherited neurological condition. Young people with Tourette Syndrome experience involuntary vocal and motor tics that can wax and wane and change, making them unpredictable. They vary from seemingly “mild” but exhausting (eg constant eye blinking) to more intense and potentially harmful (eg punching or scratching themselves). The repetitive nature of tics can also make them painful, and many people suffer from fatigue and problems sleeping.

The majority of people with Tourette Syndrome also experience co-occurring conditions including intrusive thoughts, anxiety, rages and ADHD, Autism, OCD. Many people with Tourette Syndrome try to suppress their tics in public to avoid unwanted attention. This can bring problems for young people with Tourette Syndrome at school as they try to suppress, manage or distract from their tics and so do not have the energy or capacity to concentrate on their schoolwork. When not suppressing, their tics are often misinterpreted as bad behaviour and we know that many young people with Tourette’s spend a lot of time out of the classroom, are often bullied and written off as a failure. They often struggle to make friends, leaving them isolated, lonely and anxious.

This project aims to build confidence of young people with Tourette’s through TEENfest – two residential weekends run from outdoor activity centres accommodating up to 20 young people, each at two locations

The young people who attend TEENfest will be offered a live, online training session for their school teachers and staff, spreading awareness of Tourette Syndrome, its impact and how to support a student with TS. Tourettes Action will also work with the young people who attend TEENfest to help them raise awareness of Tourette Syndrome and how it affects them.

Currently, there are no NICE guidelines for the treatment of Tourette Syndrome, meaning that there is no national clinical pathway to diagnosis or dedicated treatment pathway. Many families struggle to get a diagnosis or any form of follow-on care following diagnosis, leaving families in a state of desperation and crisis. TEENfest reduces their isolation, builds friendships and support, and raises awareness of this much-misunderstood condition.

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