A Message of Gratitude and Purpose
It is my absolute pleasure and honour to present the findings of the Impact for Tourette Study.
A couple of years ago, I was fortunate to be approached by Dr Melissa Licari with an idea that was close to her heart. A research study driven by passion, connection, and deep care. From the beginning, this project was a labour of love, and it has been a privilege for the Tourette Syndrome Association of Australia (TSAA) to support its journey.
Melissa brought together an exceptional team of professionals to guide and shape this study. Just as importantly, we were joined by an incredible community, real people living with tics and their families, who generously shared their stories, time, and trust. This has truly been a journey taken together.
This study is something rare and powerful: an opportunity to show the world the evidence-based truths about living with Tourette Syndrome and tic disorders. For the first time in Australia, we now have data that lays bare the very real, often hidden impact of Tourette Syndrome. The findings are confronting, deeply saddening, and unfortunately, not surprising to many of us in the community. They expose the systemic failings, the lack of understanding and support, and the immense unmet needs of those living with TS.
But this research also gives us something else: hope.
It gives us the opportunity to speak with authority. To advocate for real change. To demand better education, resources, and support, not just in policy, but in practice. And none of this would have been possible without the people who contributed to this project.
To the investigator team, the initial consultation group, every individual who completed the survey, the TSAA committee, UNSW, The Kids Research Institute, and the University of Western Australia – Thank You!
And to Professor Valsamma Eapen and Dr Melissa Licari: your leadership, drive, and commitment made this study a reality. You have given our community a voice, a platform, and the possibility of lasting change. I am so deeply grateful.
Together, we have taken an important step toward a more informed, compassionate, and inclusive future for people with Tourette Syndrome.
With heartfelt thanks,
Mandy Maysey
President Tourettes Syndrome Association Australia
This work arose from a deep recognition of the unmet needs so many of you have experienced – barriers that have been part of your lives for far too long. While these challenges have always been known within the community, they have never before been captured through national evidence.
This report, co-designed and delivered with people who live with tic disorders, reflects your voices, your stories, and your truth. Together, we have shown the reality of persistent gaps across healthcare, disability, education, and support systems – gaps that must no longer be ignored. This was never just about data; it was about making your voices heard, and laying the groundwork for real, lasting change. This report is a step forward – a sign of hope – but the work isn’t over. Change takes time, persistence, and community.
It has been a privilege to walk beside you in this work, and I stand with you as we continue pushing forward toward a future where you are truly seen and supported.
Dr Melissa Licari
Senior Research Fellow - The Kids Research Institute Australia
Research Officer - University of New South Wales
