Last year we launched the Touretteshero Welcome Pack, a set of artist designed letters that we provide free to children who are newly diagnosed with tics or Tourettes, and their families. The welcome pack includes letters to the child, to their parent/carers, and a version for them to give to their teachers and friends. The idea of the pack is to provide a warm welcome to our Tourettes community and to give children information they can choose to share with those around them.

For our initial roll out, we were blown away by the demand and ran out of packs within just a few weeks. I’m excited to say that we have secured funding from the National Lottery to re-print so we can continue to provide this important resource.

Following feedback from families, we also plan to add a new letter for siblings of children and young people with tics. I’ve written before about how important my sister’s support and understanding has been in my life, so I’m keen to help other siblings get off to a good start on their tic-enriched journeys.

This is where we need some help. While I know about what my sister and I have experienced, I’m keen to make sure the new sibling letter reflects the range of things that siblings might need to know or have questions about. To help with this, we have created an online survey and are looking for people to share their perspectives. So if you are a:

1) Child or young person with tics
2) The sibling of a person with tics
3) The parent/carer of a sibling group that includes a child or young person with tics.

please complete the survey and share your thoughts and ideas. The survey is around five questions long and will help inform the new letter for siblings. If you have other thoughts or ideas in relation to the wider pack, get in touch.

We’ll let you know when the new packs are ready to go.