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Dance 100 comes to Inverness for the first time in support of Huntington’s families

By Philip Murray

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Scenes from a previous Huntington’s Dance 100. Picture: Peter Devlin.
Scenes from a previous Huntington’s Dance 100. Picture: Peter Devlin.

A major event in support of families with Huntington’s disease will head to the Highlands for the first time after Inverness was named as the latest host city.

The Scottish Huntington’s Association Dance 100 roadshow will roll into the heart of the city for the first time on Saturday, September 7 for “five hours of fun, friendship and fundraising”.

The sponsored event will turn Falcon Square into a giant dance floor, ready to welcome people of all ages and abilities to show off their best moves to a live 100-song DJ set.

Volunteer event organisers include the Philip family – care worker Martin (38), his wife Rachel (36) and their daughter Sadie (9) - from Culbokie, near Inverness.

They have joined forces with other Huntington’s families to bring the event north after its success in Glasgow in 2022 and 2023 when more than 200 people took part to raise funds and awareness about Huntington’s disease, which is a complex hereditary brain condition

The condition, which damages the brain over time, can eventually leave people unable to walk, talk, eat, drink, or care for themselves. In addition to severe physical symptoms, it also changes thinking processes and can cause serious mental illness. To compound the dreadful toll on families still further, Huntington’s is genetic - anyone with a parent who has Huntington’s has a 50 per cent risk of inheriting the condition from them.

Martin, Sadie and Rachel.
Martin, Sadie and Rachel.

Martin, who lost his dad George to Huntington’s, now has early symptoms, while Rachel knows she too will also develop the disease at some stage, inherited from her mum Sarah who now lives in a care home.

“It’s a devastating disease that has changed the people we love and our families. This is made even more difficult because Huntington’s is not generally well known amongst the wider public who often don’t understand its severe physical, cognitive and mental health symptoms,” said Rachel.

“People with Huntington’s are often accused of being drunk or on drugs because of how their mobility, speech and behaviour is affected. This can leave them and their families feeling isolated in their own communities.

“Dance 100 is a great way for us all to have fun while engaging directly with the community to raise much-needed awareness. Together we will dance to make a difference by ensuring that families have access to the specialist services and support they need.”

Martin and Rachel first met as teenagers at a Scottish Huntington’s Association summer camp for young people growing up in families with Huntington’s disease.

Scenes from a previous Huntington’s Dance 100. Picture: Peter Devlin.
Scenes from a previous Huntington’s Dance 100. Picture: Peter Devlin.

Ten years later they were married and began to think about having a family. Rachel decided to be tested and was devastated when results revealed she will develop Huntington’s.

More recently, Martin’s test result confirmed that he too has the faulty gene and in the past year he developed early symptoms affecting his balance.

Martin and Rachel both take great comfort in knowing that their daughter Sadie was born free of any risk of Huntington’s disease after pioneering IVF treatment ensured the faulty gene was not passed on.

Scenes from a previous Huntington’s Dance 100.
Scenes from a previous Huntington’s Dance 100.

“Sadie knows her situation is extremely unusual, firstly because both of her parents have the faulty gene and, secondly, because there’s no risk of her ever developing the disease,” said Rachel.

“For now, we’re focussed on making sure Sadie has a happy childhood and looking after one another as a family. Martin is dedicated to his job as a support worker and I’m enjoying my university studies.

“Sadie now goes to the Scottish Huntington’s Association summer camps and she has a Specialist Youth Advisor from the charity. My mum, me and Martin are also supported by a local HD Specialist from Scottish Huntington’s Association to help us cope.”

Scottish Huntington’s Association is the only charity in the country exclusively dedicated to providing expert and personalised support for those impacted by Huntington’s disease.

IDance 100 Inverness is open to everybody and dancers are asked to raise a minimum of £50 in sponsorship in support of Scottish Huntington’s Association. The £10 registration fee for adults and £5 for children includes entry and a free Scottish Huntington’s Association t-shirt to wear on the day. Find out more and book your place at https://bit.ly/2024Dance100.

Scenes from a previous Huntington’s Dance 100. Picture: Peter Devlin.
Scenes from a previous Huntington’s Dance 100. Picture: Peter Devlin.

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