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.
Our young people meet with and talk to their dedicated SHA Specialist Youth Advisor regularly to help them cope with the challenges they face at home and to prepare for what could lie ahead.
Meeting other young people your own age from HD families to learn together and share experiences helps to reduce feelings of isolation and open up new friendships.
Our annual Summer Camp and residential breaks are free of charge to our young people so they can enjoy some ‘me’ time with friends, build their resilience and develop coping strategies.
We bring our young people together for more localised activity sessions throughout the year so they can enjoy time with friends and our Specialist Youth Advisors.
Every young person has a different experience of how Huntington’s disease impacts their lives and the lives of their loved ones. We thank them for sharing their stories with us and each other.
Our digital and print resources have been developed by the Youth Service to ensure the information being shared is appropriate for the age of each young person.
Argyll & Bute
Greater Glasgow & Clyde
Ayrshire & Arran
Dumfries and Galloway
Greater Glasgow and Clyde