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Celebrating our success!

Posted on 3 July 2018

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A little trumpet blowing to remind you of how together, we are making a better world for people with Tourette Syndrome

Patient and public involvement (PPI), usually refers to people being involved in research so we are slightly hi-jacking it to showcase some of the things that Tourettes Action (TA) have been so busy doing! We believe that involving the patients and the public who have Tourettes Syndrome in everything we do at TA can be of benefit to many people. We have been very active in our Patient and Public Involvement (PPI) initiatives to raise awareness of Tourette Syndrome. Some of them are highlighted below:

  • Research participant registry - is a voluntary database of individuals willing to consider participating in research studies and being a lay reviewer for grants. We have 214 people registered with us and the number is growing.
  • Spotlight on researchers – a profile of researchers supported by Tourettes Action. Increases public engagement in research as people get to see the ‘people behind the lab coats’.
  • Spotlight on lay members of SAB - a profile of lay members of Tourettes Action Scientific Advisory Board. This enhances transparency and ensures that the issues that matter to people affected by Tourettes Syndrome are reflected in all our funding decisions.
  • Spotlight on professionals (psychiatry, psychology, speech and language, occupational health etc) currently drafting profiles of professionals that someone with Tourette Syndrome might come into contact with during diagnosis or treatment.  Increases public engagement in research as people get to see the professionals and understand more about their role in their care. This series will be rolled out in the Autumn of 2018.
  • Research participant blogs on the Tourettes Action website gives people with Tourette Syndrome (TS) a space to talk about how their experiences of being a research participant and often shows pictures of them involved in the research.
  • Tourettes Action ID  cards explaining the condition have always been popular. We created a summer campaign where people could download for free from the TA website the ID card translated into eleven different. All translations were verified by a translations company.
  • Making videos to raise awareness

New series of 'Things Not to Say to People with...' is now available on @BBC3. After seeing the BBC3 series covering other conditions, Tourettes Action approached them with the idea of making an episode about Tourette Syndrome. You can see the BBC programme here Initiatives such as this provide a platform to debunk myths and stereotypes associated with a certain condition and to raise awareness about their cause.

 

Tourettes Action were able to assist the producers of the show by providing people to be on the show and offering specialist knowledge on the topic. Tourettes Action created their own version of Things Not To Say, and interviewed young people under the age of 16 to hear their views on how people react when they tell them they have TS - you can watch this on our You Tube channel

We also collaborated with top international digital star, Caspar Lee to make a video about growing up with Tourettes.  Several young people known to Tourettes Action got involved in this fun and exciting project, and within a month of its release the video has almost 1 million views!  That's a lot of awareness!  Watch the video here

  • Tourettes Action have just created the first guided relaxation available which is designed specifically for tics. Mindfulness and meditation is a real challenge for people with movement disorders but can be beneficial. Tourettes Action wanted to help people with Tourette Syndrome overcame barriers to practicing mindfulness this is why we have just created the first guided relaxation available which is designed specifically for tics ‘At ease with your tics: A Guided Relaxation’

The list goes on and on...we have more ideas in the pipeline...but we need your support...sign up for research...join our team of volunteers...keep giving...and thank you from Tourettes Action! 

 


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Celebrating our success!

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