Helpline:
We want young people to have an opportunity to help us develop the services, programmes and resources that we create so that we can provide the best possible support for young people impacted by Huntington's disease.
The programme started in January 2023 and has been funded by the National Lottery Community Fund.
HD Youth Voice has a huge impact and helps me feel less alone, which means I can combat everyday life with Huntington’s disease head on.
We are recruiting new members aged 14-25 to join our youth voice project. Applications will be open from 1 November until 30 November 2024.
A short film was co-created by HD Youth Voice. The project was to create a resource for young people to make a difference and make them feel less alone. They focussed on what they wished someone had told them when they first found out about Huntington's and showcased this in the form of an empowering and impactful video.
The video has been viewed almost 2,000 times on YouTube.
In keeping with the theme of wanting young people to feel less alone, the group launched a monthly, online peer support group. The sessions include the opportunity to talk about issues and challenges as well as a fun activity.
There is an interest from those who are accessing the youth engagement service with ten people registered to attend one of the past meetings.
The team were involved in the development of content specifically aimed at young people on our youth social channels. They have written blogs and recorded social media takeovers on different topics such as mental health, talking to others, school and employment.
There have been over 60,000 views of the online content
The Huntington's Passport is being developed to support other children and young people in the community. It is a document that can be shared with teachers/work supervisors about what Huntington's is and how it affects you and your family. The document can be personalised to share as much or as little information about your family life. It can be used to help professionals understand the young person's responsibilities at home.
