National Steering Group for Tics & Tourette Syndrome

 

Tourettes Action campaign, #TourettesHurts

 

#TourettesHurts aims to highlight the impact Tourette’s can have on those with the condition and those around them. As far as medical conditions go, people often perceive it to be fairly mild, mostly because they don’t understand the symptoms – or the often devastating daily impact. Their campaign hopes to bring this to life.

It's not about raising awareness of Tourette’s. It's about challenging misconceptions

The stereotypes of Tourette’s have led to prejudice, social taboo and underfunding. A falsehood with very real consequences.

We hope the campaign will encourage the general public to read and learn more about Tourette’s, enabling us to squash these misconceptions and bring understanding to those with the condition.

They have created 5 posters, which can be viewed on their wbeiste, featuring 5 wonderful people with Tourette's, all sharing a different message about why #TourettesHurts:

• Exhaustion
• Physical Pain
• Lack of Medical Provision
• Suppression
• Social Exlusion

Watch their informational video about #TourettesHurts below

More information about the campaign, and how to get involved can be found here.

 

Will Tourette’s Care Soon Get a Makeover?

Professor Maddie Groom contributed to an article by Medscape, 'Will Tourette’s Care Soon Get a Makeover?', discussing the future of Tourette's care and the INTEND project.

 

Links to TV clips and news stories

• BBC Radio 5 Live BBC Radio 5 Live - Me, My Health and I - Tourette’s Syndrome: ‘I didn't speak to anyone about it for 23 years'
• BBC News at One BBC News coverage (youtube.com)
• BBC Breakfast BBC Breakfast with Emma McNally, Eddie Marsan and his son Blu (youtube.com)
• BBC News BBC News - Neurodiversity Celebration Week 2024 (youtube.com)
• BBC Radion 5 Live BBC Radio 5 Live - Me, My Health and I, BBC producer opens up about her experience of Tourette’s Syndrome
• BBC News at 6 BBC News at 6pm - 27th June 2023 (youtube.com)
• ITV Good Morning Britain Wilamena Dyer on ITV Good Morning Britain, talking about Lewis Capaldi's performance at Glastonbury. (youtube.com)

 

The Association for Child and Adolescent Mental Health (ACAMH) podcasts

Available on the ACAMH website, or on various podcast apps including: Spotify, Apple Music, SoundCloud, CastBox and Deezer, just search for 'AMACH'

• Ready for Change? The Changing Pictture of Touretts Syndrome in the UK - June 2024
  Professor Maddie Groom and Dr Camilla Babbage are joined in a round table discussion with others in the fields to discuss Tics and Tic Disorders such as Tourette Syndrome.
• Understanding Tic Disorders: A round table on diagnosis, treatment and research - June 2024
  Dr Charlotte Hall and Joe Kilgariff are joined in a round table discussion with others to discuss Tic and Tic disorders. They talk about to what extent they are still a misunderstood condition, the main strands of treatment and the importance of collaboration between patient community, associations and health professionals.
• Tic Disorders and Tourette Syndrome: Exploring the INTEND project - April 2024
  Professor Maddie Groom talks about the INTEND research project, focusing on Tics and Tourette Syndrome, including the ideas behind the project, insights into what Tics are and the importance of a recommended service model.
• 'Teens, Tics and Tech' - Camilla Babbage 'In conversation Tourettes Syndrome' - August 2020
  Dr Seoniad Anderson talks to Dr Camilla Babbage about the development of an app for young people with tics, with a specific aim of improving wellbeing.

 

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