Scottish Huntington’s Association (SHA) has been awarded £40,000 as part of an extra package of government support to help children and young people.

Just one of 116 charities to share a £12 million pot, the money was earmarked to alleviate inequalities and poverty, support parents and carers, improve learning and improve skills.

The SHA’s share will go to support the organisation’s youth service which, has been  working with young people aged eight to 25 living in families affected by Huntington’s disease (HD) since 2001.

“I’m delighted to welcome this extra funding for our Youth Project. Due to its hereditary nature HD poses many challenges for young people growing up in affected families and the work our team does goes a long way to improve the way they approach the condition and the potential impacts it might have. The support they provide is invaluable,” said SHA chief executive, John Eden.

HD is a hereditary progressive condition that causes changes to muscle control, thinking processes and can cause long-term mental health issues. The average age of onset is between 33 and 45 and those living with the condition will require 24 hour care as it progresses into its later stages. Each child of someone diagnosed with HD is at 50% risk of developing the condition themselves. There is currently no cure.

The SHA is the only charity in the country supporting the estimated 1100 people living with the condition with another 5000 potentially at risk.

The money has come from The Children, Young People and Families Early Intervention and Adult Learning and Empowering Communities Fund and was announced by Scottish Government’s Minister for Children and Young People, Aileen Campbell.

“Tackling inequalities is at the heart of this government’s ambition to create a fairer Scotland and charities and other third sector groups are crucial in achieving this. I’m delighted we have been able to provide funding for so many organisations that provide vital support for families and communities across the country.

“I’ve seen first-hand some of the life-changing work these organisations do and this new fund has meant we can support a wider range of groups providing services from childcare to adult learning and family support to youth work,” she said.