Kirrie Girls take on new challenge as awareness grows in their home town

They’ve conquered the UK’s three highest mountains in one weekend – and now the unstoppable Kirrie Girls are limbering up to take on a five-hour dance challenge in support of families with Huntington’s disease (HD).

Jennifer Paton, Gill Ferguson, Dianne Scott, and mum and daughter Susan and Claire Dyce, from Kirriemuir in Angus, have raised more than £20,000 for Scottish Huntington’s Association since last summer – while also generating much-needed awareness about the rare disease in their local community and beyond.

They are inspired by Jennifer’s husband Mike, who was in his early 50s when symptoms of Huntington’s disease began to emerge. The diagnosis confirmed what Mike already suspected – he recognised the early signs all too well as both his late mother and his late sister had the incurable disease.

It meant giving up his career in the offshore oil industry and adjusting to the serious health changes that lay ahead. Since then, Mike’s mobility and balance have deteriorated and his speech is gradually becoming more affected.

As the disease progresses, symptoms become increasingly severe, affecting movement control and the ability to walk, talk, eat, drink and swallow. Mental illness, such as depression, mood swings and personality changes can develop, and thinking processes are impaired, leading to dementia and an inability to plan and organise.

To compound the dreadful toll on families still further, each child of a parent with Huntington’s disease is at 50/50 risk of having inherited the faulty gene that causes it.

Scottish Huntington’s Association is the only charity in Scotland dedicated exclusively to supporting families impacted by Huntington’s disease. It does this through a nationwide network of HD Specialists, Youth Advisors and a Financial Wellbeing Team.

“We held a fundraising cheese and wine evening in our home recently and about 50 people bought tickets. It was a really sociable way to bring folk together and have a blether. We raised more than £900 for Scottish Huntington’s Association that night,” said Jennifer.

“What made it even more special is knowing that we’re shining a light on a devastating condition that is not well known or understood by most people. Huntington’s disease was never spoken about when Mike’s mum was ill, not even among family members, but Mike and I have always been very open about his diagnosis and symptoms.

“Thanks to our Kirrie Girls friends, there is definitely much more awareness in Kirriemuir now. I think nearly everyone here knows about Huntington’s disease, and people often come up to us for a chat or to ask questions, which is fantastic.

“When Mike’s sitting outside on our porch, walkers on the path in front of the house stop to give him a wave. At the weekend he was getting lots of big hugs in the pub. It can be emotional because Mike’s a humble person but we’re all pleased that people have a better understanding about his illness now.”

To mark Huntington’s Disease Awareness Month, which brings the global HD community together throughout May, the Kirrie Girls have just signed up for the Scottish Huntington’s Association Dance 100 challenge, which takes place in George Square, Glasgow, on Sunday, 12 June.

“We’re not as fit now as last year when we were training to do the Three Peak Challenge so I don’t know if we’ll manage the full 100 dances but we’re going to do our best,” said Jennifer.

“We’re really looking forward to meeting lots of people from the Huntington’s community, all wearing Scottish Huntington’s Association t-shirts, dancing, having fun and taking our message about Huntington’s disease straight to members of the public.”

Scottish Huntington’s Association Chief Executive Alistair Haw said: “The Kirrie Girls and Mike are wonderful ambassadors for the Huntington’s community. In addition to raising funds to ensure the charity is able to provide lifeline services for families, they are creating change in their own community by raising much-needed awareness.

“It’s wonderful to hear that the people of Kirriemuir are so interested and supportive. Unfortunately, for too many of our families this is not the case; they are isolated because Huntington’s disease is all too often misunderstood by others. We’re working hard to change that, and what’s happening in Kirriemuir right now shows just what can be achieved when we work together in this way.”

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