Our Specialist Youth Advisors provide personalised support, age-appropriate information and resources, and opportunities to build friendships and enjoy respite experiences that would otherwise be impossible.
They also provide specialist education, support and guidance to other professionals who work with children and young people who are impacted by Huntington’s disease.
Young people growing up in Huntington’s families see the disease changing their affected parent, with many knowing they have a 50% chance of inheriting the same condition. Many become young carers for siblings or their parents, while others are unable to live with their mum or dad. Some are grieving for loved ones, others are struggling with genetic testing. Huntington’s disease impacts their home lives, education and social lives.
You can meet with and talk to a dedicated Specialist Youth Advisor regularly to help cope with the challenges you face at home and to prepare for what could lie ahead.
Your Specialist Youth Advisor is a ‘trusted adult’ outwith your family who will answer questions and provide support on a range of issues that impact young people in Huntington’s families. You may be struggling to cope with changes at home or want to know how you can care for your family member better. Maybe you’re considering genetic testing or are struggling with feelings of isolation and anxiety that are impacting you mental wellbeing. Whatever it is, your Specialist Youth Advisor is here to help. What you talk about during one-to-one session is confidential and your Specialist Youth Advisor will not tell anyone what is discussed, not even your parents, unless you give permission or you are deemed to be at risk.
Meet other young people your own age from Huntington’s disease families to learn together and share experiences to reduce feelings of isolation and open up new friendships.
Group sessions for ages 8-12 and 13-17 are held throughout the year in February, April and October. Led by our Specialist Youth Advisors, it’s a great way to meet other young people who understand what living in a Huntington’s disease family is like. You’ll also find out more about the disease in an informal, friendly and supportive environment.
Our annual Summer Camp and residential breaks are free of charge so you can enjoy some ‘me’ time with friends, build resilience and develop coping strategies.
The highlight of the year for many of our young people is the five-night Summer Camp which welcomes 50 young people of all ages from all over Scotland for indoor and outdoor activities. Young people of secondary school age also join the Huntington’s disease Festival which explores a specific topic relating to the disease.
We also offer short residential breaks throughout the year for 8-12 year olds, 13-17 year olds and 18-25 year olds with a great mix of fun activities combined with age-appropriate Huntington’s disease focussed workshops.
We bring young people together for more localised activity sessions throughout the year to enjoy time with friends and our Specialist Youth Advisors.
Over the years we’ve tried lots of activities including ice skating, trampolining, white water rafting, go-karting, chocolate workshops, visits to the Glasgow Science Centre, indoor climbing, trips to the cinema – we listen to what you would like to do then we put a plan in action.
It’s a great way to try out new activities, make new friends and catch up with old ones.
“My daughter looks forward to every activity day and residential. She has learned new skills and built up her confidence and resilience through these amazing experiences. The individual support from her Specialist Youth Advisor is fantastic and as a parent I am so happy that this service is available. I can’t thank the Youth Service enough!”
“I love the camps every year, doing all the activities.”
“Mum’s diagnosis two years ago was a huge shock because we knew nothing about Huntington’s disease or that it was in our family. I want to be strong for my younger sisters but I do worry about the hereditary risk. Kevin, our Specialist Youth Advisor, is great; I can talk to him about anything at all and ask questions that I don’t want to worry Mum and Dad with.”
“I’ve known I’m at risk of developing Huntington’s disease since I was young. Mum got in touch with Scottish Huntington’s Association and I’ve been meeting up regularly with one of the charity’s Specialist Youth Advisors ever since. it’s made a huge difference to how I live my life and I understand much more about the disease. There’s always someone to answer my questions and help me to understand the changes in my dad’s health.”
“Scottish Huntington’s Association has been in my life since I was 12. I had a Specialist Youth Advisor to talk to and he helped me through the testing process. Nevertheless, when the result came back negative it was a huge shock because I had convinced myself that I would develop the disease too. I’m still in touch with Pete, who has been my rock over the years, and he supported me again when I was struggling with Dad’s death”
“I’ve been supported by the Youth Service for eight years now – my Specialist Youth Advisor is really good to talk to and he arranged for me to meet other young people going through similar experiences, including as a young carer. Dad’s short-term memory isn’t good now, which means he can’t be left alone in the house or go out by himself. I take care of making meals, cleaning the kitchen, hoovering and other things.”
“Mum’s health was getting worse and I really needed extra support during that time and when Mum passed away. My Specialist Youth Advisor kept in touch every couple of days. Whether it was a five minute phone call just to check in or an hour-long video chat, it made a huge difference having someone to speak to. We would talk about Mum, ways to look after mental health, how I was coping with stress at school, anything that was worrying me.”
“I went to the Youth Service summer camps every year from the age of about 15 until about 19. Getting to know other young people was great and I can’t put into words how grateful I am to the Specialist Youth Advisors. They made finding out about such a horrible disease so much easier, and I went from not knowing what to do to having this whole field of people to talk to and message.”
New Things at Max’s House is a story book for ages 0-8. It is a gentle introduction to Huntington’s disease and provides parents with the opportunity to ask questions to their child and add in their family’s Huntington’s disease information.
A great resource to normalise Huntington’s disease conversations in your family.
DownloadLiving with Huntington’s disease: A guide for young people aged 8-12 is an information booklet designed to introduce and educate children aged 8-12 about Huntington’s disease.
This booklet takes a gentle approach to introducing Huntington’s disease symptoms to the child, along with support around feelings and what to expect next.
DownloadLiving with Huntington’s disease: A guide for young people aged 13+ is an information booklet designed to introduce and educate children aged 13+ about Huntington’s disease.
This booklet gives more detailed and age appropriate information about Huntington’s disease symptoms, genetics, risk, relationships, living with Huntington’s disease, genetic testing and emotions.
DownloadTip Jar is a range of resources designed to provide information and advice around key financial topics and challenges young people growing up in a family with Huntington’s disease may face.
Aimed at ages 16+ these resources were developed in partnership with young people growing up in families impacted by Huntington’s disease.
Visit HereTalking with young people about Huntington’s disease: A toolbox guide for parents is a workbook designed to support you in disclosing your family’s Huntington’s disease to your child. Packed full of information, advice and tips this workbook also allows you a space to note down your own thoughts and ideas.
DownloadHave a look at our current videos for out in the open and Sarah’s advice for parents
Youth Service Lead
Argyll and Bute
Greater Glasgow and Clyde
Forth Valley
Business First
Burnbrae Road
Paisley
PA1 2FB
Specialist Youth Advisor
Fife
Lothian
Scottish Borders
Whyteman’s Brae Hospital
Whytman’s Brae
Kirkcaldy
Fife
KY1 2ND
Specialist Youth Advisor
Grampian
Highland
Tayside
Clinical Genetics Centre
Ashgrove House
Aberdeen Royal Infirmary
Foresterhill
Aberdeen
AB25 2ZA
Specialist Youth Advisor
Ayrshire and Arran
Dumfries and Galloway
Greater Glasgow and Clyde
Lanarkshire
Business First
Burnbrae Road
Paisley
PA1 2FB
