Tourettes Action Launches #Misunderstood Campaign

From May 15^th to June 15^th, Tourettes Action (TA) is leading a powerful national campaign to shine a light on the reality of living with Tourette Syndrome (TS). Their boldest initiative yet, #Misunderstood, calls on everyone to reframe their understanding of TS and stand alongside the 300,000+ people in the UK affected by this often misjudged condition.

Despite affecting 1 in 100 school-aged children – on par with Autism and epilepsy – Tourette Syndrome remains one of the most misunderstood neurological conditions. Too often, it’s reduced to inaccurate stereotypes or seen only through the lens of swearing. The truth is far more complex. TS is a lifelong, genetically based neurological condition that impacts both children and adults in deeply personal ways.

A Campaign Rooted in Real Stories and Shared Voices

The #Misunderstood campaign centres around a stirring music video that reimagines Nina Simone’s “Don’t Let Me Be Misunderstood.” Featuring 18-year-old Grace Cope and a choir of individuals living with TS, the film captures what it feels like to navigate daily life with the condition, including moments of frustration, strength, humour and resilience.

“This is our most ambitious campaign yet,” said Emma McNally, CEO of Tourettes Action. “It’s not just about raising awareness. It’s about changing the story. For too long, people with TS have been judged or dismissed. We’re here to show the humanity behind the tics and invite the public to listen, learn and stand with us.”

For Grace, who leads the choir in the video, the campaign is deeply personal: “Behind every tic is a person with dreams, talents, humour and heart. I hope that by sharing my story, more people can understand what Tourette’s really is and what it isn’t.”

 The choir members each bring their own story, united by a shared message. Understanding replaces stigma. For Billy Lockett, a The Voice finalist from Northamptonshire, the experience of singing with the choir was “wholesome and comforting,” showing just how powerful community can be.

 Their stories are honest, raw and moving. They remind us all that TS is more than a diagnosis – it’s a lived experience filled with challenge and strength, frustration and joy.

Why Neupulse Supports This Campaign

At Neupulse, we’re proud to support the mission of Tourettes Action. Like them, we believe that greater awareness leads to greater understanding and better support for those with TS. Our work developing non-invasive, wearable technology to help manage the symptoms of TS is driven by the same goals. Empowerment, dignity, and choice.

We know that real change happens not just through innovation, but through empathy. That’s why campaigns like #Misunderstood matter. They humanise the condition, highlight the voices of people with TS and encourage all of us to listen more, judge less, and be more inclusive.

How You Can Help

Whether you live with TS, know someone who does, or are just beginning to learn, you can play a role this Tourette’s Awareness Month.

• Watch and share the #Misunderstood campaign film

• Use the hashtag #Misunderstood on social media to spread the message

• Host a conversation in your workplace or classroom

• Support the work of Tourettes Action through donations or volunteering

Every action helps break down stigma and build a more understanding society. Visit Tourette's Action here to find out more about getting involved.