Scottish Huntington’s Association has been given an £80,000 funding boost from the National Lottery Community Fund’s Young Start Award for the charity’s lifeline work with young people.
The charity provides tailored services for families with Huntington’s disease (HD) in Renfrewshire and across Scotland through its HD Specialists, Financial Wellbeing Officers and Youth Advisors.
Huntington’s disease causes severe physical and mental symptoms, including a loss of control over movement, reducing ability to walk, talk, eat and drink. Thinking processes are damaged, making it difficult for people with HD to carry out tasks, make decisions and look after themselves. The incurable disease also leads to mental illness, including mood swings, depression and, in some cases, psychosis.
The dreadful toll on families is compounded further by the reality that each child of someone with HD is at 50% risk of having inherited faulty gene that causes Huntington’s.
The Young Start Award from the National Lottery Community Fund is helping to provide tailored support from Scottish Huntington’s Association’s Youth Service. This includes 1-2-1 and group sessions with specialist youth advisors, activity days and workshops. The service also provides residential trips to improve mental and emotional wellbeing, build confidence, reduce social isolation and offer a break from caring responsibilities.
Youth Service Lead Kirsten Walker described the Young Start Award funding as ‘phenomenal“.
“Children growing up in families impacted by Huntington's disease experience significant and often devastating ongoing losses and challenges, which no child should have to face unsupported,” she said.
“Often children have to become the main carer for their parent which has a significant impact upon their mental and physical health, education, social experiences and future.
“Additionally, the children are living with the knowledge that they are at risk of developing the disease which has a tremendous impact on their wellbeing. The impact of growing up in a HD family is indescribable and through receiving this award, we can empower our young people to manage their HD journey, discuss and support any challenges they are experiencing and provide them with much needed peer support and respite. For many young people this support is life changing.”
The funding also recognises the commitment of Scottish Huntington’s Association to work in partnership with families, including the young people who use the Youth Service while helping to shape its approach and priorities.
National Lottery Community Fund, Scotland Chair Kate Still said: “I would like to congratulate Scottish Huntington’s Association on their award which is testament to the incredible efforts of their staff and the young people they work with.
“We are always keen to support projects which put Scotland’s young people at the heart of the development and running of services. If your group has an idea how you would make this happen, then we’d love to hear from you.”