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

Amye

Amye is currently studying to be a mental health nurse. In her spare time she enjoys seeing her friends and walking her dog. She has recently taken up cheerleading at uni as a way to meet more people.
It has been an amazing way to meet other young people who are impacted by Huntington's disease and be able to raise awareness. After the first residential, I felt so much better after speaking to other young people and everyone being able to relate to each other and it made me feel a lot less lonely. Being a part of HDYV has also opened so many doors for me which I am so grateful for.
Amye

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

Hollie

Hollie is currently studying chemistry at University, alongside working day-to-day as a Laboratory Analyst. In her spare time, Hollie loves playing rugby, running, hiking and spending time with friends and family. She joined HDYV in 2026, but has been supported by the youth engagement service since secondary school. The amazing support received from the youth service, who were there during some really tough times, led Hollie to join HDYV to give back to the charity.
HDYV has helped me be more open about Huntington's disease, and for the first time, I have had discussions about a part of my life that I usually keep to myself. Being able to get to know other people who are going through similar situations makes me feel seen, supported and understood. I am so inspired by everyone in this group, and I look forward to being part of something that can have a positive impact on other young people like me.
HDYV - Hollie

Hugo

Hugo joined HD Youth Voice in 2025. His mum has Huntington's and he is at risk. Because of this, he wants to throw himself into opportunities such as fundraising events and getting stuck in with HDYV. Hugo enjoys concerts and the gym in his spare time as well as F1 Motorsports.
Being part of the HD Youth Voice has helped me open up to others about Huntington's disease. After my mum was diagnosed back in 2020, it's been a struggle to adjust to a new normal. At the time, I found making friends harder than ever before. However, talking to others in a similar situation helps me realise there is always help available, and I don't have to face this alone. It has been a slow and steady improvement, but I'm taking my time and meeting new friends.
HDYV

Iris

Iris works in security and in her spare time, loves spending time with her son, taking him out to different places. She also enjoys going on journeys to new places on her motorbike.
What I love about the HDYV is how they don't make you feel alone. You are with people who understand what you have gone through or going through. All the new ideas that they are coming up with to raise awareness for Huntington's is absolutely amazing. You can make friends for life with the HDYV and its astounding
Iris - HDYV

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

Manraj

Manraj joined HD Youth Voice in 2025, driven by her desire to raise awareness about Huntington's disease. She enjoys working with others to come up with new ideas for the group.
Since joining HD Youth Voice, I've felt a real sense of community and made so many great friends. I feel like everyone in HDYV just 'gets me' and I'm so glad to be working alongside my friends for a cause we're all so passionate about!
Manraj

Megan

Megan was a young carer for her dad who had Huntington’s disease, sadly she lost her Dad to the disease in December 2024. Megan lives at risk of inheriting the faulty gene, and is passionate about empowering and advocating for the Huntington’s disease community. In her spare time, Megan loves being outdoors, music and spending time with her dog.
I’m so grateful to be a part of this group, getting to know people who are impacted by Huntington’s disease, who I now call my friends. Together we’re a force to be reckoned with and are all passionate to use our personal experiences to make a difference for the entire community and more specifically young people and children who are impacted by the condition.
Megan Ambassador

Poppy

Poppy enjoys travelling to different places and exploring different cultures and new environments. She is creative and enjoys art, photography, and participating in charity events.
Being part of the HDYV has been an amazing experience for me. I have felt a lot of acceptance, being able to be with others around my age who understand Huntington’s in a similar way. I have also gained a new confidence which I never had before joining the HDYV and have made incredible friends who are just like a second family. A very memorable memory for me was attending the residential in February 2023, where I met everyone in person for the first time after only seeing each other through video calls for our projects, even though I was anxious at first it was a surreal experience, and I would wholeheartedly recommend HDYV to anyone.
PoppyB

More about HD Youth Voice

Huntington's disease youth voice

Empowering voices - Huntington's disease youth voice

Young adults

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Group of young people in the woods

Working with young people on the HDYV project

Community stories

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