Sarah Winckless is better known for her sporting exploits. She started to make waves in the rowing world when she won a bronze medal for double sculls at the 2004 Athens Olympics.
She was then one of the four-strong team – including Scot Katherine Grainger – who twice took the world champion title in the women’s quad at the World Rowing Championships in 2005 and 2006.
Since her retirement from the sport in 2009, she has since become a motivational speaker and continues to work in the sport as a coach and umpire, gaining an MBE for services to sport and young people for her efforts.
But now another side to her work is being recognised: her tireless efforts in campaigning and working with those who are touched by Huntington’s Disease, an issue close to her heart.
Since 2009 she has been the patron of the Scottish Huntington’s Association (SHA) and has worked to raise the awareness of the debilitating disease and the impact it has on people’s lives.
The charity, which is based in Paisley, was established by families living with Huntington’s disease in the late 1980s and provides a range of specialist services across Scotland for sufferers of the disease and their families, including peer-to-peer support and youth advisors.
This year Sarah has been recognised for her charitable efforts after gaining a nomination in the Scottish Charity Awards, run by the Scottish Council for Voluntary Organisations. Winners will be announced on Thursday, June 9.
At the age of 23, Sarah was herself diagnosed as having the gene for Huntington’s. Her mother Valerie was diagnosed with the disease in 1996.
It’s a little-known, hereditary illness which affects the brain and nervous system. It causes involuntary movements and leads to physical and mental decline, including dementia, with sufferers requiring more and more care as the disease progresses. At present, there is no cure and children of sufferers usually have a 50% likelihood of inheriting the disease.
Sarah, 42, says: “Sometimes in life things happen by chance. There was a chance at my conception that I got the gene rather than not getting the gene. That wasn’t the chance that I wanted.
“But I was lucky enough to come up to Scotland when [the Scottish Huntington’s Association] was in its 20th year. I came to have a conversation to a group about Huntington’s, my thoughts and feelings about it, and I left having been asked to be patron of an organisation that is doing amazing things for the Huntington’s community. And that was a happy chance, for sure.”
Sarah, who lives in Hurley, Berkshire, says the recognition she has achieved for working with the SHA is both an honour and a humbling experience, saying “there’s always that part of you that wants to do more, there’s an element of ‘do I deserve this’ but equally I hope I can make a big difference and to be part of that I’m very honoured”.
She adds: “The Scottish character of resilience and tenacity shines through in the charity, in the way that they fight for the families of those affected by the disease, helping them to achieve as good a lifestyle and situation as possible.
She works alongside SHA chief executive John Edan (“a phenomenal, caring man, who wants to make a difference”) to plan her work with the charity for the year ahead.
This may include lobbying the Scottish Parliament, on issues such as Big Lottery Support or the Care Bill. However, her favourite part is the outward bound week away with young people, often young carers, who are at risk of having the disease themselves.
“I’m definitely in touch with my child’s side,” she says, “so for me, to spend a week kayaking and canyoning with this group, it’s just phenomenal.
“Their relationships are very strong and they welcome you to their community, and as with any group of young people there are lots of different personalities and the charity run it so well. I think they get a lot out of that week, I know I do.”
As well as her work with the SHA, she’s also taken part in numerous activities to raise the profile and campaign about the disease, including climbing Mount Kilimanjaro with her brother Charlie, who does not carry the Huntington’s gene, and bike rides between London and Paris, and Paris and Geneva.
It’s this “can-do” attitude which she hopes to translate to those who suffer from Huntington’s.
She says: “When the disease starts to encroach on your life, it can be very easy to think about what you can no longer do, but the truth is there’s still a lot of life out there and a lot of living to be done, so what can you do? Have a go at things safely and enjoy it.”
For more information about Scottish Huntington’s Association, visit http://hdscotland.org/