Dame Katherine Grainger praises our Patron for commitment to Huntington’s community

For Dame Katherine Grainger it’s about showing up – for your sport, for your team, and for your friends. If you can manage all three in one afternoon, well that’s a win-win that has one of the greatest Olympians of all time on a train back home to Glasgow.

The Bearsden-born rowing superstar found herself on the banks of the River Clyde, reading graffiti covered walls and admiring the iconic ‘squinty bridge’ with best pal and former Team GB teammate Sarah Winckless.

Watching the friends joking on the riverside, it’s hard to believe that Sarah has Huntington’s disease, an inherited terminal condition that will overwhelm this strong and optimistic 6ft 2in Olympian.

“I knew Sarah’s mum, Valerie, who was in a wheelchair and no longer able to speak. When I look at Sarah it’s hard to accept that could be her future,” said Katherine.

Together they won the quad World Championships in 2005 and 2006, and two decades on the thrill of those back-to-back wins is as vivid today, while the bond, born in a boat as elite athletes at the top of their game, is just as strong.

They were in the city for the Women of Scotland Lunch, an annual gathering that began in 1958 to celebrate women who have made a difference in their community. This year the event was raising money for Scottish Huntington’s Association, a cause close to Sarah’s heart and, through their friendship, Katherine’s too.

They make an impressive duo – Katherine, recently appointed the first female Chair of the British Olympic Commission, is a former Chair of UK Sport, and has also broken 500 years of tradition as the first female Chancellor of Glasgow University. Meanwhile Sarah is the first female umpire of the Men’s Oxford-Cambridge Boat Race, a former Chair of British Olympic Athletes Commission, and a former Non-Executive Director with UK Doping.

Nowadays the all-consuming drive that brought World Championship and Olympic glory – five medals in five consecutive Games in Katherine’s case – is tempered by new ambitions and dreams on dry land.

For Sarah it’s the hope that a treatment will be found. And that all families will have the knowledge and support that wasn’t there for her.

Caused by a faulty gene, Huntington’s can leave people unable to walk, talk, eat, drink and look after themselves. Symptoms include loss of control over movement, impaired thinking processes, dementia, and mental illness such as depression, anxiety and psychosis.

“The disease was more advanced in my mum at my age so I feel fortunate to be well and symptom free so far,” said Sarah (51).

“When I was growing up Mum’s behaviour and movements were strange, and people thought she was drunk because her speech was slurred. It was a relief to get a diagnosis and give it a name.”

However with that came the grim reality for Sarah and her three siblings that they could develop the disease – “There’s a 50/50 risk to each child of someone with Huntington’s, the toss of a genetic coin,” explained Sarah.

It was while studying at Cambridge University and already a rising star in rowing that tests confirmed the worst. All Sarah could do was throw herself into training and hope symptoms would be slow to start. That decision took her to the top of international sport.

“There was lots of media interest when I won bronze in the double sculls at the Sydney Olympics. Mum was there but she clearly wasn’t well and I was approached by a journalist who had seen us together. I decided it was the best time to tell the world about my Huntington’s status,” said Sarah.

For Katherine, it meant finding out as much about the disease as she could and being there with support.

“Sarah is such a mature, wise adult but when we first met she was more of an extreme personality, living every moment to the max, the life and soul of the party,” she said.

“Anybody involved with high level international sport knows the highs and lows are immense. Then you realise that Sarah also has this other part of her life that brings very different highs and lows.

“It’s an amazing privilege to learn about something so massive in her life. I cheered Sarah on when she won her Olympic medal but I’m never prouder than when I hear her speaking from the heart about something so important.”

Katherine continued to compete until 2016 while Sarah retired from the sport in 2009.

Almost immediately she was approached to become Patron of Scottish Huntington’s Association, the only organisation in the country exclusively dedicated to supporting people with Huntington’s disease and their families. A wonderful surprise, says Sarah, given that she was born and raised in Reading.

“My imposter syndrome went crazy but I’d seen the incredible work the charity does. Nowhere else in the world has the level of support provided by Scottish Huntington’s Association and hundreds of families rely on its specialist services,” said Sarah.

There are around 800 people in Scotland with symptoms, a further 3200 at risk of developing the disease, and hundreds of carers who need support.

And as new research by the University of Aberdeen indicates numbers will rise, especially in northern Scotland which has one of the highest rates of Huntington’s in the world, the charity’s services are more needed than ever.

“As a proud Scot, I’m delighted that Sarah chose to be Patron of Scottish Huntington’s Association, I know how much it means to her and I know the great energy and positivity she brings to families,” said Katherine.

CEO of Scottish Huntington’s Association, Alistair Haw, agrees: “Huntington’s disease is a hugely complex, widely misunderstood and extremely difficult to manage condition. Specialist services are not some ‘nice to have’ optional extra but an absolute necessity for families throughout Scotland.

“We’re hugely grateful to Sarah and Katherine for their support for our work. It’s difficult to think of a more powerful double act advocating for the Huntington’s community.”