Aarran Air
Chair
Family Member
Chartered Accountant & Financial Controller
Scottish Huntington’s Association is governed by a Board of voluntary Trustees, who have a collective legal responsibility for the direction and performance of the charity.
They are required to act with appropriate care and diligence in the interests of the organisation, and to comply with duties such as financial and other reporting to the Scottish Charity Regulator (OSCR), as set out in Section 66 of the 2005 Charities and Trustee Investment (Scotland) Act.
Our Trustees contribute a wealth of knowledge and skills to the organisation including expertise in youth work, finance, education, healthcare, research, governance, business, operations and strategy.
This governance structure ensures that Scottish Huntington’s Association mission and values – the principles upon which the charity was founded by families – underpin all our work and meet the standards expected by donors, volunteers, partner organisations and the community we serve.
More information about the roles and responsibilities of charity trustees.
Professor Emerita Lorna Milne FRSE
Joint Deputy Chair
Former Master of the United College and Deputy Principal, University of St Andrews
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Dr Marie Short MBE
Joint Deputy Chair
Family Member
Regulatory Affairs Associate Director (Retired)
Our Patron
Sarah Winckless MBE is an Olympic medal winning rower, a double world champion and an international advocate for families with Huntington’s disease.
As part of Team GB she won a bronze medal in the double sculls at the 2004 Athens Olympic Games and was twice world champion in 2005 and 2006. After retiring from rowing in 2009, Sarah continued to contribute to sport and inspire leadership at the highest levels, including as Chair of British Olympic Association Athletes Commission (2010); and Non-Executive Director with UK Anti-Doping, the national organisation dedicated to the protection and promotion of clean sport. She led Team GB to the Youth Olympic Games in 2014 and Team England to the Commonwealth Games 2018 in Australia. Already a Henley Royal Regatta Steward, Sarah made history in 2020 when she was named as the first woman umpire in the 166-years of the Men’s Oxford-Cambridge University Boat Race. The event went ahead in 2021 following an enforced break due to the Covid pandemic.
In addition to winning amongst the sporting elite and playing key roles in some of the biggest events in the UK and the world, Sarah has been Patron of Scottish Huntington’s Association since 2009. She accepted the voluntary role soon after speaking publicly about facing the onset of Huntington’s disease. One of four siblings, each of whom had a 50% risk of inheriting the disease from their mother, Sarah tested positive during her final year at university. This means that she will develop the symptoms of Huntington’s at some stage.
Through her advocacy and campaigning, Sarah has become a leading figure amongst the global Huntington’s community, inspiring and engaging families, practitioners, researchers and decision makers in Scotland and far beyond.