Young people living in families affected by Huntington's disease can sometimes feel isolated. Meeting others who understand what life is like can make a huge difference.
We recently spoke with Ava and Blake on an Instagram Live about their experiences of getting involved with the Huntington's Disease Association Youth Engagement Service (HDYES) and the events and opportunities that young people can take part in.
Ava is a member of our HDYV group and an active part of our fundraising community. She believes that speaking openly about Huntington’s disease helps break down stigma, supports families who may be struggling, and reassures other young people that they are not alone. Blake is part of our HDYV community and brings a powerful perspective shaped by his experiences. He shares that living in a family affected by Huntington’s disease can be difficult, but it has given him a strong sense of determination to live life to the fullest.
Getting involved with Youth Voice
Through Youth Voice, young people have the opportunity to share their perspectives, contribute to projects and help shape support for other young people affected by Huntington's disease.
Youth events for young people
Both Ava and Blake have attended several youth events, including escape rooms and residential events.
Ava recently attended our summer camp. This was her first experience of meeting other young people from Huntington's families. Ava said,
"I've been to two escape rooms, I've been on the summer camp, and then I came to the residential in February as well. They all really help because the summer camp was my first time going to anything and when you feel really nervous going but when you get there it's just like one big family like you've all known each other for ages and you just make lots of new friends.. you're all going through the same thing so it's just really helped in the best way."
Blake shared that attending events helped him meet people who quickly became close friends.
"I've been to one escape room with Ava that was really fun and helped me meet a lot of new people. I went to my first residential in February, and that was really fun, and I made some lifelong friends."
Residential events include a range of activities designed to build confidence, teamwork and friendships, alongside giving young people time to work on projects and connect with others. Blake shared how trying new activities helped him overcome fears.
"I really enjoyed the activities, ziplining, that was really fun, and I'm normally quite scared of heights, but I feel like I helped calm that fear down."
Summer camp
Our summer camp is for children 8-17 years old who are impacted by Huntington's disease. Camp is a great way to make friends and chat to others who understand what it is like to live in a family with Huntington's disease. Being around people who 'get it' can make a big difference and camp gives children the space to talk, share experiences and have fun together. Camp is also jam-packed with fun outdoor activities including things like zipline, archery and canoeing. It's a great opportunity to try something new, build confidence and make some amazing memories with new friends.
Ava described how meaningful the experience was.
“I found it really good because every time we got free time to do like what we wanted to do me and the girls that we were sharing a room with would all go sit in our room and just talk about our experiences and to share with each other obviously whatever we felt comfortable with like we wouldn’t push anyone outside their comfort zone we all told stories about what was going on in our lives and we all helped each other and it was just a very like positive place to be around and it was just probably one of the best times.”
Learning to support each other
One of the most important parts of these events is the opportunity for young people to share experiences and support each other. Blake said the experience helped him feel more comfortable talking about Huntington's disease.
"I've learnt it's okay to open up and talk more freely about it to people, because some people know what you're going through and they know how to talk to you about it so you don't need to hide away."
A message for anyone feeling nervous
The Youth Engagement Service supports young people aged 8 to 25 who are living in families affected by Huntington’s disease, offering opportunities to connect, learn and take part in activities together. At our events, there are always members of the HDYES team on-site, able to give support and guidance if needed. These activities are to support young people in making new friends and taking part in new experiences.
Attending a new event can feel daunting, especially when meeting new people for the first time. Ava said:
"I'd say it's okay to be nervous cause I was nervous but when you get there, everything goes out the window because you're just so wrapped up in having fun and getting to know people and like talking to all the different youth workers and you forget you are not at home, it feels so positive and homely."
How do I find out about these events?
Our website and parent mailing list are a great way to find out about these events.