scottish huntington's disease

Increased funding and award winning initiatives have helped make the past 12 months a ‘transformational year’ for Paisley’s national charity, the Scottish Huntington’s Association.

Writing in their annual report Chief Executive, John Eden said that the way the charity delivers vital lifeline services has become more focused and that 2014-15 had seen ‘much to celebrate.’

scottish huntington's disease

Overall the charity spent £1.3 million on supporting families with the degenerative brain condition Huntington’s disease (HD), a 10% increase on last year.

Key milestones for the charity over the past year include:

  • The establishment of the UK’s only degree level module in HD care, set up in partnership with the University of Stirling. Winner of this year’s Perfect Partnership category at the Scottish Charity Awards
  • Launch of a new youth support educational resource, HD Routes
  • New financial wellbeing service for HD families set up that has secured £80,000 for service users so far
  • New research fellowship funded at the University of Aberdeen

“There have been many great moments for the charity this year as we continue to grow, not least our unexpected Charity of the Year Award. I would like to take this opportunity to thank all the staff who have worked so hard to deliver the services HD families rely on over the past year and for helping to make this a really transformational year for the charity,” said John.

SHA is the only charity in the country supporting families living with HD through specialist nurses, financial wellbeing advice, the world’s leading youth support service and dedicated team of volunteers.

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


There are estimated to be 1,100 people in Scotland living with the condition but as many as 5,000 could be potentially at risk.

“This coming year promises to be just as rewarding for us. We have been working closely with the Scottish Government to try and establish more consistent levels of HD care across the country and news on how this is progressing will be coming out very soon. Despite our success over the past year challenges remain and we won’t be standing still. We have increased our fundraising target to £500,000 for the coming year which will be a challenge, but we feel with the help of our fantastic supporters we will be able to meet it,” added John.

See a full copy of the annual report and accounts at