Funding is now in place for the Scottish Huntington’s Association Summer Camp 2022 thanks to a grant of £19,603 from the Short Breaks Fund, which is operated by Shared Care Scotland on behalf of the Scottish Government.

This is combined with additional funding, including a £5,000 donation received in October from Scotmid Co-Operative’s Community Fund towards helping young people in Fife, Edinburgh and the Lothians.

We are all set to accommodate 50 young people from across Scotland for a five-stay stay at Lagganlia Outdoor Learning Centre, near Aviemore, hosted by our Specialist Youth Advisors next July.

The Coronavirus pandemic forced the cancellation of the 2020 and 2021 camps. Instead, young people were supported through a series of tailored virtual events and workshops.

SHA’s annual Summer Camp gives young people aged 8 to 25 from across Scotland a break away from home and their caring responsibilities, the chance to meet up with friends and make new ones, and an opportunity to try new activities.

Crucially, it also provides age appropriate support, workshops and information about Huntington’s disease and its impact, delivered by SHA’s Specialist Youth Advisors to help young people to build their resilience and prepare for what lies ahead.

Youth Service Lead Kirsten Walker said: “For the young people we support this is one of the few opportunities they have to get together with others who understand their situation and receive specialist support tailored to their needs. There are no other similar opportunities available to young people living with Huntington’s disease in Scotland.”

Living in a family impacted by Huntington’s disease is extremely challenging for young people who will see their parent change dramatically and deteriorate, whilst also living with the reality that they too could develop the disease. Most of the young people supported by SHA’s Youth Service are young carers, which impacts their school life, peer relationships, leisure activities and, later in life, employment.

SHA’s Youth Service has found that three in every four of the young people it supports have reported self-­harm behaviours, low self­-esteem, low confidence, low mood, anxiety and depressive traits. And because of the stigma that surrounds Huntington’s disease, the young people are often isolated within their peer groups and experience bullying.

Kirsten added: “Throughout the camp there will be a range of evening activities to keep our young people entertained and active.  These will include games night, circus skills, swimming and party night. We hope that the young people can then consider taking part in similar activities when they return home and perhaps use them as a coping mechanism should things become difficult there.

“We also hold a festival for all young people aged 13 and above, during which we look in depth at HD topics including genetic testing, living with HD, and rights and responsibilities. Many young people have no other opportunity to have these in-depth discussions which are essential to increase their resilience and understanding.”

Feedback from the most recent Summer Camp (2019) revealed that 90% of participants stated that their coping skills had increased and 98% concluded that their wellbeing had improved. Furthermore, through attending camp 100% of those who identify as young carers said that they had enjoyed their break away and it had given them a renewed energy for returning home to their caring responsibilities.