The Scottish Huntington’s Association, has been awarded £700k to develop its youth support service.

They are the only charity in the country supporting families living with the degenerative brain disorder Huntington’s disease.

The award from Big Lottery Fund Scotland’s Investing in Communities programme will secure the service for the next five years.

The SHA’s youth service is the biggest in the world and offers education and support to young people aged between eight and 25, who have a diagnosis of Huntington’s disease in their family with specialised one-to-one support, a summer camp, advice and information about living with the disease.

HD is a hereditary degenerative brain condition that cause involuntary movements, changes to thinking processes and mental health issues. It develops from aged 33 onwards and in its latter stages those affected will need 24 hour care. Children of those diagnosed also have a 50% chance of developing the condition. There is no cure.

The Scottish Huntington’s Association is the only charity in the country that supports families living with the disease.

John Eden, chief executive of Scottish Huntington’s Association, said:

“Thanks to this amazing Big Lottery Fund award we will be able to support young people; providing them with information, advice and emotional support, connecting them to other young people in the same circumstances, and making sure they are better linked to support and services from education, health and social care and working with parents and young people to enable families to communicate about this difficult subject.

Without this award we would be unable to support young people and there would be no other way for young people to access the support they need.”


Congratulating the SHA on being selected Big Lottery Fund Scotland chair Maureen McGinn said it would help the charity make a real

“The main aim of our Investing in Communities programme which is to bring real and lasting improvements to communities and the lives of those most in need,” she added.