Tourettes Action

Tourettes Action is the leading UK-wide charity supporting people living with Tourette syndrome and their families.

Tourette syndrome is a neurological condition that causes involuntary movements and sounds called tics. Around 300,000 people in the UK are thought to be affected, yet it remains one of the most misunderstood and stigmatised neurological conditions. Misconceptions leave people feeling isolated, judged and unsupported, impacting every aspect of life.

Since 1981, Tourettes Action has been providing information, support and hope to people living with Tourette syndrome, as well as those searching for answers and awaiting a diagnosis. Gaining a diagnosis can often take years, and the charity is there long before that point, helping people better understand their symptoms and navigate the challenges they face.

Tourettes Action works to improve understanding in the places that matter most. Through specialist support for schools, the charity helps children and young people access the understanding and adjustments they need to thrive in education. Workplace support services help employees and employers build more inclusive environments, ensuring people with Tourette syndrome are supported to reach their full potential.

The charity also brings people together through a range of community events, including TICfest, where children, adults, siblings and parents can connect with others who share similar experiences. For many, it’s the first time they realise they’re not alone.

Through support, education, advocacy and awareness raising, Tourettes Action is helping to create a future where everyone with Tourette syndrome feels understood, accepted and empowered to live the life they choose.

I'm delighted to be supporting this appeal for Tourettes Action, a charity that means a great deal to me and my family. My son lives with Tourette syndrome, so I've seen firsthand both the challenges that can come with the condition and the difference that understanding and acceptance can make.

Too many people still have an inaccurate picture of Tourette syndrome. As a result, children, young people and adults can find themselves facing unnecessary judgement at school, in the workplace and in everyday situations.

Tourettes Action is helping to change that. Every day, the charity provides advice, information and support to people affected by Tourette syndrome, while also working to increase awareness and understanding across society.

The stories featured in this appeal show the strength, determination and potential of people living with Tourette syndrome when they are given the right support.

Please help Tourettes Action continue this important work.

When Freya began experiencing tics at the age of seven, her family found themselves searching for answers. Living in County Durham, they struggled to access local support and felt unsure where to turn.

Tourettes Action supported the family before Freya’s diagnosis, providing trusted information, practical advice and reassurance, helping them understand Freya’s symptoms and navigate next steps.

Following her diagnosis, Tourettes Action continued working with the family, helping her school, relatives and gymnastics club better understand Tourette syndrome and how to support Freya.

Today, Freya is a talented acrobatic gymnast who recently won gold at the North of England Regional Prelims before competing at the National Acro Championships.

Freya’s mum says:"The support we received was invaluable. It helped us understand Tourette syndrome, support Freya better and ensure the people around her understood her needs too. At a time when we felt very alone, Tourettes Action was there for us."

Danielle, who is known to friends and family as Dannie, is 35 and lives with Tourette’s. She works as a Billing Manager for a global company, a role she enjoys, and spends her free time with family, friends, her boyfriend and much-loved dog.

Like many adults with Tourette’s, Danielle has experienced challenges during her career. Through Tourettes Action's workplace support service, she received guidance tailored to her needs.

Working alongside Danielle, the charity helped her develop the knowledge and confidence to talk about Tourette’s and understand her rights at work. Tourettes Action also provided resources and advice to share with colleagues, helping to increase awareness and create a more understanding working environment.

Danielle says:"Knowing Tourettes Action was there whenever I needed them gave me the confidence to share my story. Their kindness, encouragement and support made what could have been a very daunting experience feel so much more manageable."

Following Matthew's diagnosis, the family turned to Tourettes Action for support. Through the charity's helpdesk and school support services, they received advice that helped Matthew access the support he needed.

The family have attended Tourettes Action TICfest events, experiences they describe as transformational. For Matthew, meeting others with Tourette’s helped him realise he was not alone and build friendships with others who understood. TICfest also gave his sister, Evie, the chance to meet other siblings and feel part of a community.

Matthew’s mum says:"Meeting other families and children with Tourette’s changed everything for us. Matt realised he wasn't alone, made friends and could see a future beyond his tics. Evie loved meeting others and as parents we found people who truly understood our journey."