Scottish Huntington’s Association in Scotland has been awarded a grant of £120,000 over three years by BBC Children in Need. This grant will fund vital work by SHAYP, the charity’s youth service, and help make a difference to the lives of children and young people in Fife, Edinburgh and Lothian.

This three-year grant will fund a Specialist Youth Advisor to reach young people aged 8 – 18 years from families affected by Huntington’s disease. Through 1-2-1 support and group activities, young people will be helped to build resilience, make friends, access services to reduce caring responsibilities, and improve family relationships.

Huntington’s disease is an incurable neurological condition with complex physical and mental symptoms. These include a deterioration in motor function which leads to reduced control over movement and a loss of ability to walk, talk, eat and swallow. The disease also causes mood and personality changes and, in some cases, serious psychiatric illness. As it progresses, people with Huntington’s disease can require 24-hour care, meaning they are no longer able to stay in the family home with loved ones.

Growing up in a family impacted by the disease is incredibly challenging. Not only does the young person have to watch their parent dramatically change and deteriorate, there is often a role reversal with the young person taking on caring responsibilities whilst living with the knowledge that they too could develop the condition – each child of an HD parent is at 50% risk of inheriting the faulty gene that leads to the disease.

Kirsten Walker, Youth Services Manager at Scottish Huntington’s Association, said: “We could not reach out to the young people in Fife, Edinburgh and the Lothians without the support of BBC Children in Need. This grant will go on to change the lives of so many young people and give them the support they need.”

Simon Antrobus, Chief Executive of BBC Children in Need, said: “At a time when children and young people need our support more than ever, I am incredibly proud to be awarding funding which will go on to positively impact their lives.  These grants were only made possible thanks to our remarkable supporters, so a big thank you to everyone who supported us in 2019.”

Across Scotland, BBC Children in Need currently funds 309 projects to the value of more than £19.4million.