End the stigma: Tourettes Action’s #Misunderstood campaign demands empathy, not assumptions
Tourettes Action launches powerful #Misunderstood campaign for Tourette’s Awareness Month. Nationwide call to end misconceptions and foster empathy for over 300,000 people in the UK living with Tourette syndrome
From May 15th to June 15th, Tourettes Action, the UK’s leading Tourette syndrome (TS) charity, is calling on the public to stand in solidarity with those living with the condition. The charity launches its boldest campaign yet: #Misunderstood—a nationwide movement aimed at dismantling harmful stereotypes and highlighting the everyday realities of living with TS.
Despite affecting 1 in 100 school-aged children—a prevalence similar to Autism and childhood epilepsy—Tourette syndrome continues to be widely misunderstood. Too often dismissed as a behavioural issue or unfairly linked to swearing, TS is in fact a complex, genetically determined neurological condition that affects both children and adults. Tourettes Action is working to reframe the narrative and bring understanding where judgment has long prevailed.
The #Misunderstood Campaign
At the heart of this year’s awareness efforts is a powerful multimedia campaign created in collaboration with creative agency AML and production company The Attic. Featuring a stirring reinterpretation of Nina Simone’s “Don’t Let Me Be Misunderstood”, the campaign stars Grace, a young woman with Tourette’s, alongside a choir of individuals also living with the condition.
The film captures the emotional weight of navigating life with TS—from explaining involuntary tics to confronting public misconceptions and unwanted stares. It builds to a moving finale where the choir joins together in a call for empathy, connection, and deeper understanding.
“This is our most ambitious campaign yet,” says Emma McNally, CEO of Tourettes Action. “Through music, film, and visual storytelling, we want to show the world what it really means to live with Tourette’s. It’s not just tics—it’s daily challenges, strength, and a desire for acceptance. With over 300,000 people living with the condition in the UK alone, we believe this campaign can help shift the narrative and unite communities around understanding and inclusion. We are calling on you the reader to share our message – help us reach the masses!”
“This project is more than just a video - it’s a voice for all of us who have ever felt silenced, stared at, laughed at, or left out”, says Grace Cope, lead singer, aged 18 from Bedfordshire. “It’s a reminder that behind every tic is a person with dreams, talents, humour, and heart. My hope is that by sharing my story, and through this campaign, we can help more people understand what Tourette’s really is and what it isn't.”
“Being in the Tourette’s choir was an honour, it blew my mind how many talented inspiring people are in this community”, says Billy Lockett from Northamptonshire, finalist from THE VOICE show. “Tourette’s has been something I struggled with all my life but just spending some time with like minded people was incredibly wholesome and comforting”.
“Living the best part of my life believing that I am the ‘problem’ and I will not amount to or achieve anything because I have felt not ever good enough or that I am the embarrassment / weird one to those around me bringing zero confidence, but I wanted to break this”, says Sophie Willoughby, choir member, aged 37 from Poole. “I have learnt now that it's the world and the people around me that can misunderstand TS and so I pray that this can challenge and help to combat the stigma and build a better foundation of acceptance and education going forward in this campaign.”
"Too often, Tourette syndrome is reduced to a punchline or misunderstood entirely. My work for Genius Within, as an ambassador, focusses on educating and rewriting that narrative, and that’s exactly what this campaign is all about — rewriting the narrative with honesty, dignity, and courage”, says Paul Stevenson, choir member, aged 61 from Berwick-Upon-Tweed. “Let’s raise our voices for the 300,000 people in the UK living with Tourette’s. This isn’t about pity—it’s about power, pride, and being properly understood".
“I jumped at the chance to be a part of this campaign based on having Tourette syndrome for over 32 years and I am fully aware of the widespread stigmas, struggles and pain associated with this condition”, says Jason Cohen, choir member, aged 36 from York. “I am fully committed to doing what I can to help increase awareness, accessibility to effective support and inclusivity for this condition.”
“I hear the world say "you can't" and I want to say I CAN” says Shay, choir member, aged 13 from Essex. “Me and my Tourette’s family have a voice and what better way than coming together in unison to show we all CAN and we WILL. Awareness is key and acceptance is possible.”
"I participated in the Tourette’s awareness campaign choir to celebrate the power of music as a creative and therapeutic outlet, helping us connect through shared expression and community. It's also a powerful way to raise awareness and challenge misconceptions about Tourette’s, showing the world the strength and humanity behind a condition that is so often misunderstood" says Ione Georgakis, choir member, 31 from Plymouth.
“I was diagnosed with Tourettes in my late teens and really struggled during the pandemic and when looking for university places”, said Megan Hastings, choir member, 19 from Cardiff. “I am studying voice, so this campaign appealed to me because of the musical aspects, but also to demonstrate how you can still perform and contribute with Tourettes. I hope this campaign will spread awareness as well as breaking the stereotypes around the condition.”
How to Get Involved
Tourettes Action is inviting individuals, schools, workplaces, and media outlets to support Tourette’s Awareness Month by sharing the campaign, hosting awareness events, and joining the conversation on social media using #Misunderstood.
Whether you're raising awareness at school, having conversations in the workplace, or simply educating yourself and others—every action counts.
Let’s replace misunderstanding with compassion.
Let’s bring understanding to Tourette’s.
Visit https://www.tourettes-action.org.uk/192-tourettes-awareness-month-2025.html to learn more, access campaign materials, and watch the full #Misunderstood film here Tourettes Action Misunderstood Awareness Campaign Film.