Margaret completes 10th Walk of Hope

This year marks the 10th Walk of Hope by Houston volunteer Margaret Moncrieff in support of families, including her own, who are impacted by Huntington’s disease.

Since 2012, the 76-year-old has been bringing people together each year to make their way along the banks of the Clyde at Erskine.

On Saturday her small but mighty band of walkers completed the socially-distanced trek once again, pushing the total amount raised by Margaret’s Walk of Hope over the past decade to more than £10,000 for Scottish Huntington’s Association.

Margaret’s younger sister tested positive 16 years ago. She was 58 – and it was only then that Margaret, aged 60, and her late brother found out that they could have it too.

“We always thought we were quite a healthy family but scientists think it was most likely inherited from my mother who died when she was 71 without ever showing symptoms of Huntington’s disease,” said Margaret.

“Our late brother, my sister’s twin, died nine years ago and we’re sure he had it as well, although he was never tested. When I found out that each child of a person with Huntington’s is at 50% risk of inheriting the disease, I needed to plan ahead for the future so I had the test. For me, it came back negative.”

Huntington’s disease, which is incurable, causes a deterioration in motor function that leads to uncontrolled jerky movements and the loss of ability to walk, talk, eat and drink.

It also affects mental health and causes mood swings, personality changes and damage to thinking processes. With such complex physical and mental symptoms, people with the disease often need 24-hour care, meaning they are no longer able to live at home with loved ones.

Today there are around 1100 people in Scotland with the disease, and a further 4000 to 6000 at risk of having the gene.

“Someone once said that people who test negative are in need of support as well. I’m walking through life feeling like I got away with something when my brother and sister weren’t able to. Survivor’s guilt,” said Margaret.

“That’s why I do everything I can to raise awareness about Huntington’s disease, which is still widely misunderstood or not known about by too many people. I have wonderful support from my friends and family, and my church, Houston and Killellan Kirk.”

SHA Chief Executive Officer Alistair Haw said: “Margaret has raised an incredible amount of money for Scottish Huntington’s Association over the years. Her energy and commitment also extended to volunteering in our National Office each week before the pandemic hit, sharing her expertise and talents with the team in support of our work to ensure families have the care and support they need.

“And she’s always looking for opportunities to raise awareness, including by giving talks to community groups. Amazingly, Margaret juggles all this with her work at a local solicitor’s office. We can’t thank her enough for all that she does, Margaret is an absolute inspiration.”

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