A couple of years ago the child of one of my colleagues got an official Tourettes diagnosis. When they told us over Zoom, we all cheered. My hope is that our joyful response will have sent the message that they’re perfect exactly as they are and that Tourettes doesn’t have to be something that’s sad or scary, but instead can be the start of an adventure of self-discovery.

This experience got me thinking about how we could do something similar for other children who receive a Tourettes or Tic Disorder diagnosis. How could we welcome them to our community and make them feel seen and valued?

We started by talking to lots of children and adults about their experience of getting diagnosed. They told us that while it could feel quite lonely the diagnosis was important because it helped them get the right support.

Based on our conversations we decided to create a Welcome Pack of letters for children with Tourettes, their families, friends, teachers and carers.

We wanted to make sure the Welcome Pack was full of useful information, but we also wanted it to look and feel beautiful. We worked with illustrator Amber Anderson to create a design that is full of care. Alongside the letters, there’s also a ‘More Than One Touretteshero’ reusable wall sticker to remind young people that they’re not alone and that we’re all powerful.

There’s no right or wrong way to be a Touretteshero. For me it’s not about having special skills or superpowers. It’s about celebrating the perspective Tourettes gives me and understanding that I have the power to decide how I use it.

I’m excited to say the Touretteshero Welcome Pack is now ready and we’re keen to send it out to children who have been newly diagnosed with Tourettes or other tic disorder. If you’re the parent or carer of a child or young person who might benefit from receiving a pack, please complete this online form and we’ll get one out to you.

The pack is best suited to people aged 8-16, although you can request a pack for an older or younger child as well. It’s completely free, but if you want to make a donation to support our work, you can do that here.

Because we want to make sure the pack gets to as many children as possible, we’ll only be sending the physical pack out to children with tics.

The early days with Tourettes can feel overwhelming so we want children and their families to know that there’s a community with deeply held knowledge who are ready to offer support.

If you know a child who might like to receive a pack, please share this post with their family.