We are delighted to share the launch of an exciting new research project exploring how we can create better futures for people living with Tourette Syndrome.

Towards Tourettic Futures is a five-year project led by Dr Daniel Jones from the Department of Sociology and the Institute for Medical Humanities at Durham University, supported by a £615,169 Wellcome Trust Early Career Award. The project will explore the role that intersectional identity and technology have on community experiences of Tourette Syndrome.

TIC-Yorkshire will be working alongside the project as a part of a wider partnership, helping to ensure that the experiences and priorities of people with Tourette Syndrome remain at the heart of the project, and we are excited to collaborate with other third-sector research partners on the project including Tourette Canada, Tourette Association of New Zealand, and Tourette Association of Malaysia.

The project will look particularly at people whose experiences are often missing from research and service design, including BAME and LGBTQ+ experiences of Tourette Syndrome. It will explore how different people experience Tourette Syndrome and the challenges they can face when seeking support, accessing services, and simply being understood by the people around them.

Why does this matter?

For many people with Tourette Syndrome, the challenges don’t end with having tics. Being misunderstood, facing stigma, struggling to access appropriate support, and encountering services that don’t reflect the reality of people’s lives can all have a significant impact, and make people feel more isolated. Research such as this can help us understand these experiences and, importantly, think about what needs to change.

Over the next five years, the project will create opportunities for people with Tourette Syndrome and their communities to shape the research. We hope this will help build a stronger evidence base for improving support, healthcare, and services while challenging some of the assumptions that can make life harder for people with Tourette Syndrome.

For TIC-Yorkshire, being involved means helping to make sure that research remains connected to the people it hopes to benefit. We’re particularly excited about the potential for this work to contribute to a better understanding and better support for people with Tourette Syndrome across the East Yorkshire and Humberside region and beyond.

We’ll be sharing more about the project and opportunities to get involved as the research develops.

This is the beginning of a five-year conversation about what a better future for Tourette Syndrome could look like, and how we could make this happen. We are delighted to see that the Wellcome Trust are investing in important Tourette Syndrome research, and can’t wait to see what’s next!

For more information, get in touch with us or Dr Daniel Jones on daniel.p.jones@durham.ac.uk