Recently, Tourettes Action’s research manager attended the 2014 Annual ESSTS meeting and COST International Conference for Tourette Syndrome. This took place in April at the Pitié-Salpêtrière Hospital in Paris, home to Jean-Martin Charcot and one of his most famous students, Georges Gilles de la Tourette.
A fascinating conference which included research updates about neurological advances in brain imaging, gene expression and experimental treatments such as deep brain stimulation. This was a meeting of academics and researchers interested in Tourette’s syndrome.
The audience included neurologists, neurogeneticists, neurophysiologists, psychiatrists, paediatricians, doctors and researchers. Therefore, there was a great deal of terminology used in the presentations about techniques used to investigate how the brain and genes are involved in Tourette’s syndrome.
It’s always a challenge to understand this kind of highly complex and data rich presentation. To take away from each presentation something useful of what does this mean for people with Tourette’s syndrome? It’s reassuring to hear all of the research that is going on in the fields of brain and genetic research to understand Tourette’s syndrome and how to help with new treatments. Also encouraging to see was so many well known experts from this field and young researchers from countries all over Europe who attended.
How can the TS community engage in this research? How can we all work together to understand TS and affect new treatments?
Become involved in research!
Your involvement will help so much and is essential to furthering research and understanding this condition. Whether its filling out questionnaire surveys, being involved in interviews, or having your brain scanned or ultimately signing up to donate your brain after your death are the essential building blocks to finding out more about TS and how we can improve the lives of people who have this condition.
- Read about the experiences of people with TS who have been involved in research.
- Read about researchers TA is supporting and read about why they are involved in research and see the faces behind the research projects.
- Get involved and read about the current research projects on our TA page.
Another feature of this conference was a patients group meeting which was attended by people from TS support associations from across Europe. Representatives from countries attended such as Germany, Norway, France, Belgium, Holland, Hungary, Poland, Spain, the Czech republic, Finland, Greece and Denmark.
This was the third meeting of the European Tourette Syndrome Patient Groups. We know hope to create an umbrella organisation of all of the countries in order to improve the lives of people living with TS and their families across Europe. This group is setting up a webpage and facebook sites and will be meeting again next year. There will be more information about this umbrella organisation as it takes form.
So all in all a tremendously successful and engaging conference, filling us full of enthusiasm for the future and how we can come together across Europe and raise awareness of TS.
