HD Youth Voice gives young members from the community the opportunity to be involved in shaping the future of how we support young people.


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.

Huntington's Disease Youth Voice

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.

HD Youth Voice projects

You are not alone film

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.

 

Project highlight

The video has been viewed almost 2,000 times on YouTube.

 

Virtual peer support

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.

 

Project highlight

There is an interest from those who are accessing the youth engagement service with ten people registered to attend one of the past meetings.

Social media content

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.

 

Project highlight

There have been over 60,000 views of the online content

Huntington's passport

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.

 

Download the printable passport

 

Fill out the digital passport

 

Meet some of HD Youth Voice

Chloe

Chloe works as a children’s occupational therapist in the NHS, but outside of work loves hiking and travelling, connecting the two where possible; the photo is Chloe hiking in Peru to Machu Picchu. Chloe knew her risk of Huntington’s disease from age 19 and at 24 tested gene negative. Whilst on my journey of predictive testing for Huntington’s she received (and continues to receive) incredible support from the Huntington’s Disease Association’s Youth Engagement Service, and so she wants to give something back to the charity to help support other young people going through similar experiences and that led her to being a part of HDYV.
My favourite part of being a member of HDYV on a personal level, is that it’s helped me to meet others in similar circumstances and make friends. I have enjoyed being a part of creating a peer support group to help reduce isolation amongst the young people in the community, having had my own experiences of how lonely being impacted by Huntington's can be - we would love to welcome you to a peer group session or HDYV!
Chloe

Charlotte

Charlotte looks after her mum who is in the middle stages of the condition. In March 2023 Charlotte found out that she also carries the faulty gene and since then has made it her mission to spread awareness of Huntingtons's disease. In her spare time, Charlotte enjoys CrossFit, football and running and loves using these to raise money.
I get so much from being part of the group, I’ve made life long friends who wholeheartedly understand what I go through and that’s life changing after spending so much of my life feeling like the only person impacted by HD. It’s great to have such a positive impact on lots of projects that will help other young people like me. I’ve climbed Mount Kilimanjaro
Charlotte

Joe

Joe joined HDYV as a way to share his story and support other young people who were dealing with Huntington's disease in their family. Joe is a very big football fan and travels the country to watch it with his mate. Joe was actually an academy footballer for seven years and played against teams like Man City, Liverpool and Manchester United.
HDYV has had a massive impact on me in different ways - it's changed my mindset and the way I look at things and it has also helped me come forward and share my story - and for a young lad, that's really hard to do. It's also given me a second family. Each and every single one of the members is so inspiring and amazing.
Joe

Rebecca

Rebecca got involved with HDYV as she was initially part of the steering group to set it up and wanted to stay a part of it as a way to do something positive to help others impacted by Huntington's disease. Rebecca enjoys sewing, baking and reading and has recently taken up Irish dancing. She is part of a Guinness world record for most people flipping pancakes at the same time - even though she hate pancakes.
A highlight of HDYV so far has been seeing how the initial ideas for HDYV have grown into what it is today. Another highlight is the residential where it is lovely to see each other in person.
Rebecca

More about HD Youth Voice

Huntington's disease youth voice

Empowering voices - Huntington's disease youth voice

Campaigning, Young adults

Read more

Group of young people in the woods

Working with young people on the HDYV project

Community stories

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