Man takes on gruelling challenge to break Huntington’s stigma

A man who lost three family members to Huntington’s disease is completing a 100km challenge to raise awareness and break stigma around the condition.

Mark Barrett, 38, from Howwood, Scotland, is taking on four half marathons and a triathlon over nine weeks after losing his father Frank, grandfather John and uncle Raymond to the inherited neurological disorder.

Huntington’s disease is caused by a faulty gene that damages brain cells over time, affecting movement, thinking and behaviour. Anyone with an affected parent has a 50 per cent chance of inheriting the gene.

Barrett’s father, Frank – known locally as “Glasgow’s biggest bookie” – died in July 2021 after developing symptoms in his late 60s.

His Maryhill betting shop appeared in Trainspotting and Still Game.

“I’ve grown up around Huntington’s all my life,” Barrett said.

“My uncle Raymond died when I was four or five. He was just 33 and in the early 90s it was largely an ignored illness.

“I had never met my grandfather John, who died in his 60s. But in July 2021 we lost my dad under the most cruel circumstances.

“Not just because of the disease, but because it came at a time through Covid when we weren’t allowed to see him.

“He was taken away from us and we were very limited in our visiting hours and time to spend with him.

“I want to help families affected because I know how crippling and how cruel it can be in all areas of life.”

The disease can affect a person’s ability to walk, talk, eat and care for themselves. Frank began having trouble walking as symptoms worsened.

Barrett, a business owner and actor who has worked with Robert Carlyle and James McAvoy, said he wishes he had spoken more openly about his father’s illness.

“Around the late 90s his shop became infamous as it was used in Trainspotting, in the scene where Renton runs in at the start,” he said.

“The last few years of his life we noticed a decline physically and cognitively and sadly, on my mum and dad’s wedding anniversary, my mum left the home and he died in my arms the next day.”

Barrett has chosen not to undergo genetic testing to see if he carries the gene.

“If it comes back positive then we will forever live in the shadow of this. But you can test positive and never be affected by it,” he said.

“For every family affected it’s entirely personal to their position. I haven’t been tested and I don’t intend to.”

He completed the Great Scottish Run on 4 October and the MacQueen Bros Mid Argyll Triathlon on 28 September, finishing in the top six.

He will now take on the Bellahouston Half Marathon, the Strathclyde Country Park Half Marathon and a Movember Half Marathon, aiming to complete his challenge on 23 November.

Barrett has already raised more than £3,000 for Scottish Huntington’s Association and hopes to double his initial £2,500 target.

“I’m doing this to help other families affected because I know how incredibly lonely and frightening it can be,” he said.

“There can be a misconception of what the illness can do. That’s the nature of it because there are so many different facets of the symptoms.

“Don’t be afraid to talk about it. We spent a long time trying to protect my dad.

“It’s not a taboo subject. It’s something that unfortunately isn’t going away whether you talk about it or not.”

Recent research has given families hope.

Last month, data suggested a new gene therapy administered during brain surgery had slowed disease progression by 75 per cent in patients.

“I would like to see the money raised go into both research and family support,” Barrett said.

“While research is hugely helpful, it’s also important for families to have the safest environment around them for people needing end of life care or support.”

His campaign has attracted support from Trainspotting author Irvine Welsh, who shared Barrett’s story on social media.

“Irvine Welsh got in touch and shared my story on his page, which was incredible and overwhelming.

“I’m so grateful for all the support I’ve had so far,” Barrett said.

Scottish Huntington’s Association chief executive Alistair Haw said: “This is a hugely challenging time for the charity sector, which is why we are especially grateful to Mark for his fantastic efforts to raise funding for our cause.”