Patron of the Paisley based Scottish Huntington’s Association (SHA) has been shortlisted for a top honour at the Scottish Charity Awards.

Sarah Winckless MBE has been the charity’s figurehead since 2009 and has worked tirelessly to help raise the profile of the their work to support families affected by the degenerative brain condition Huntington’s disease (HD).

Organised by Scottish Council for Voluntary Organisations (SCVO), Sarah has been shortlisted in the ‘Charity Champion’ category.

A former Olympic and World Champion rower Sarah has first hand experience of the condition as she has tested positive for the faulty gene that causes HD.

“It has been an honour to have served the charity these past seven years and I’m delighted to receive this recognition, not just for me, but for the profile it will give to raising awareness of HD,” said Sarah. “As someone with the positive HD gene, I know personally the impact it has on families and I’m passionate about increasing understanding of the condition. I feel very privileged to work with the SHA and help in some way with the tremendous work they do with HD families, their support makes such a positive difference to hundreds of families lives across the whole country.”

HD is a hereditary progressive condition that causes changes to muscle control, thinking processes and causes long-term mental health issues. 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 no cure.

As well as support and motivation Sarah has also raised more than £50k to help support the charity’s team of specialist nurses, its youth service and its financial wellbeing programme.

SCVO’s chief executive Martin Sime said:

“Year after year Scottish charities and voluntary organisations prove themselves to be beacons for creativity, tenacity and innovation. This year’s Scottish Charity Awards finalists demonstrate these qualities in abundance and are shining examples of how people can work together to make Scotland a better place.”

The winner will be announced at an awards ceremony on June 9.

“No single person has done more to raise the profile of HD and the work we do to support families living with the condition across Scotland. I’m delighted that all her hard work over the years is being recognised,” said SHA chief executive, John Eden.

The Charity Champion category is decided by public vote. Votes can be cast for Sarah here.

After the votes were counted, the Charity Champion of 2016 award was won by Gordon Aikman and Lucy Lintott, congratulations! Both Gordon and Lucy have spread awareness and raised funds for Motor Neuron Disease and they are continuing to do so. Well done to all the charities involved in the SCVO Scottish Charity Awards.

Notes to editors:

  • Scottish Huntington’s Association (SHA) is a Scottish charity established by families living with Huntington’s disease (HD) in the late 1980s in response to a lack of support services
  • There are now nine specialist HD support teams around the country providing families with information and advice about all aspects of the disease, able to assess support needs and coordinate the care they need.
  • Children of people diagnosed with HD have themselves 50/50 chance of developing the condition and the Association also has three specialist youth advisors to counsel those potentially living with the disease.
  • SHA also supports a network of family branches which are run by family members for family members and provide information and peer support.

Media contact:
Craig Cowbrough