A Falkirk woman who fights to improve the lives of people suffering from Huntington’s Disease (HD) has been made an MBE in the Queen’s Birthday Honours List.
Marie Short (48) is trustee of the Scottish Huntington’s Association (SHA) and has been on the charity’s board of SHA for five years.
During that time she has shared her professional expertise as a former Regulatory Affairs clinical trials manager in a pharmaceutical company.
And on a very personal level she is someone whose family has been profoundly affected by the disease.
Tragically, the HD gene was inherited both 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 the disease, but she doesn’t know when.
Commenting on her MBE distinction, 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.
“They 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 - a stigma around HD 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 are at risk of developing the disease.
It is a severe, progressive neurological condition caused by a faulty gene which leads to loss of control over movement, creating speech and swallowing difficulties.
It also impairs ability to think, plan and make decisions, and sufferers can experience episodic mental illness.
The severe symptoms mean that many will ultimately need 24-hour care outwith the family home.
Meanwhile each child of an HD parent has a 50 percent chance of developing the condition, so the disease impacts families across the generations.
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 is said to have 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.
Meanwhile Marie is praised as “an amazing fundraiser and ambassador for SHA”.
She also 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 has additionally served as secretary and West District Convener, contributing significantly to the growth of the club.
She collected £10,000 by walking the West Highland Way, undertaking the English Coast to Coast Cycle and trekking in Nepal.
Her 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 find out more about the work of Scottish Huntington’s Association, visit https://hdscotland.org/
To register for #My Zen Run, visit https://hdscotland.org/my-zen-run/