Scottish Huntington’s Association (SHA) trustee Marie Short has been made an MBE in the Queen’s Birthday Honours List in recognition of her services to supporting people affected by Huntington’s disease (HD).
Marie (48), from Falkirk, has been on the board of SHA for five years, sharing both her professional expertise as a Regulatory Affairs clinical trials manager in a pharmaceutical company and her personal experience as someone who lives in a family affected by the disease.
The Queen’s Birthday Honours List recognises extraordinary people across the UK for achievements that include making a difference to their community or field of work, improving life for others and long-term voluntary service.
In addition to contributing to the work of Scottish Huntington Association, Marie volunteers as a coach and judge with Grangemouth ASC Synchronised Swimming Club, which relies on people giving up their time to deliver training sessions and competitions for its young members.
Marie said: “I feel extremely honoured to be recognised in this way, however this award really reflects the combined efforts of many people, including fellow trustees on the SHA board, fundraisers, supporters and staff at Scottish Huntington’s Association, who all share a real determination to improve the lives of people affected by HD.
“It is a disease that is not well known or understood by the wider public, there was more of a stigma around HD that means too many people and families are left feeling isolated and alone in their communities, and we are all working together to change that.”
Around 1100 people in Scotland have HD and another 6000 people are at risk of developing the disease. A severe, progressive neurological condition, HD is caused by a faulty gene, which leads to the loss of control over movements, speech and swallowing difficulties, impaired ability to think, plan and make decisions, and episodic mental illness.
The severe symptoms mean that many people will go on to need 24-hour care outwith the family home. And because each child of an HD parent has a 50 percent chance of developing the condition, the disease impacts families across the generations.
The gene was inherited by Marie and her three siblings. Her brother Hunter died five years ago aged 50 and Marie’s two sisters Janet (54) and Kathleen (57) are being cared for in nursing homes. Marie knows that she too will develop Huntington’s disease; she doesn’t know when.
SHA Chief Executive John Eden said: “Despite, or perhaps because of, the extraordinary challenges she faces, Marie is an inspirational example of how to live with a positive attitude.
“She strives to make the lives of others living with the condition better, giving unstintingly of her time and energy. It’s her dedication and compassion for her family, and her commitment to supporting others, that mark Marie as an incredible individual.”
Marie’s insight has been a major driver in helping to steer the direction of SHA, which since its founding in 1989 has grown from a small network of family branches to a national organisation that delivers world-leading services, advocacy and support. It is the only charity in Scotland dedicated exclusively to supporting people living with HD, including young people growing up in an HD family.
Further to her commitment as a volunteer trustee, Marie is an amazing fundraiser and ambassador for SHA. She collected £10,000 by walking the West Highland Way, undertaking the English Coast to Coast Cycle and trekking in Nepal.
Such dedication has inspired friends and family members, including two friends who undertook a walk along the Great Wall of China to generate vital funds and raise awareness.
Marie’s latest venture – the SHA #MyZenRun – combines her passion for health and wellbeing with her determination to shine a light on the HD community in Scotland and beyond. The challenge invites members of the public to take part in a 30-day virtual running event this summer to mark the 30th Anniversary of SHA, raise awareness and funds, and enjoy the physical and mental health benefits of taking part.
Marie said: “I’m always thinking of what to try next to raise awareness and money. I’ve taken part in a few virtual running events and I love the sense of community that you get with everyone having the same challenge to meet or the same charity to support. I really wanted to share that opportunity and give SHA its own virtual run.
“For me, it’s all about looking after your physical and mental health every day. I do this mainly with running and yoga and so My Zen Run was born.”
Marie is married to Duncan, and is mum to two teenage children, Arran and Amy.
To register for the My Zen Run, visit https://hdscotland.org/my-zen-run/