Scottish Huntington’s Association (SHA) Trustee and volunteer fundraiser Marie Short, from Falkirk, has been presented with an MBE by the Duke of Cambridge at a ceremony in Buckingham Palace.
The investiture took place on Thursday, 19 December 2019 at the Royal residence, where Marie was joined by her husband Duncan, their two children Arran and Amy, and her mum Rose Heath to celebrate the special day as a family.
It was announced in the Queen’s Birthday Honours list in June that Marie (48), from Falkirk, was to be recognised for volunteer work that includes supporting people affected by Huntington’s disease (HD) as a Trustee and fundraiser with Scottish Huntington’s Association (SHA).
Speaking after the investiture ceremony, Marie said:
“It was an amazing experience, and to be able to enjoy it with my family made it all the more special. I am humbled and thrilled to receive such an honour, which I do on behalf of every single family affected by Huntington’s disease.
“I am indebted to everyone who has supported my fundraising and awareness-raising campaigns over the years – thank you for digging deep and spreading the word in support of families living with this disease. I really want this to shine a light on our community and to be an opportunity to start conversations about Huntington’s disease.”
Marie enjoyed a brief conversation with the Duke of Cambridge, during which he asked about Scottish Huntington’s Association and thanked her for supporting the charity’s work and the wider HD community.
“It was wonderful to have the chance to talk to the Duke of Cambridge about the charity and the work it does in partnership with families and supporters, and I thanked him for the opportunity to help raise awareness about Huntington’s disease,” said Marie.
Around 1100 people in Scotland have Huntington’s disease and another 5000 people are at risk of developing the disease. A severe, progressive neurological condition, Huntington’s disease is caused by a faulty gene which leads to a combination of severe and complex symptoms. People with HD can lose the ability to speak, walk, drink and eat and also experience impaired ability to think, plan and make decisions. It can also cause serious mental illness and many people with go on to need 24-hour care in a nursing home.
Its devastating toll is compounded by the reality that each child of an HD parent is at 50% risk of inheriting the faulty gene and going on to develop the disease themselves.
Marie has lost her father and two siblings to the disease, and her older sister requires 24-hour nursing care. Marie knows that she too will go on to develop HD symptoms after testing positive for the faulty gene in her 20s.
Determined to improve the lives of her loved ones and the wider HD community, Marie has been on the board of SHA for five years, sharing both her professional expertise as a former Regulatory Affairs clinical trials manager and her personal experience as someone directly affected by the disease.
Her insight is a major driver in helping to steer the direction of Scottish Huntington’s Association, which since its founding in 1989 has grown from a small network of family branches to a national organisation that delivers services through a network of HD specialists, world-leading youth support, and financial wellbeing advocacy for HD families facing poverty and hardship.
It is the only charity in Scotland dedicated exclusively to supporting people whose lives are affected by Huntington’s disease. To find out more about the work of Scottish Huntington’s Association, visit www.hdscotland.org.