Inverness man marks birthday with fundraiser for Scottish Huntington’s Association disease breakthrough
An Inverness man is marking his 40th birthday with courage, fundraising, and awareness for the Scottish Huntington’s Association - inspired by new advances in Huntington’s research that offer hope to thousands affected by the condition.
Alistair MacCulloch discovered in his early thirties that he carried the Huntington’s gene. The inherited disorder gradually damages nerve cells in the brain, affecting movement, thinking, and behaviour - effects he describes as “detrimental”.
At the time, he was living in Aberdeen and working for a manufacturing company. Life carried on as normal for a while, but within a few years, early symptoms began to appear.
“Even if you have the gene, it doesn't necessarily mean that you will become symptomatic,” he explained. “But when I found out I did have it, I had to start making big decisions - whether I was going to continue to work,” he said. “In my case it came to an end.
From diagnosis to determination
Since his diagnosis, Alistair has poured his energy into raising awareness about Huntington’s. Earlier this year he shared his story on a podcast, and last year he completed a parachute jump that raised over £1,000.
His next challenge comes later this month - a charity fundraiser to mark his milestone birthday.
The event, held at the Legion in Inverness on October 18, will feature raffles and auctions, with all proceeds going to the Scottish Huntington’s Association. Alistair has set himself a target of £4,000 - “a thousand pounds for every decade I’ve been alive.”
Huntington’s has shaped Alistair’s life long before his own diagnosis. His mother, Anne Wilson, lived with the condition and died 20 years ago. His grandmother also passed away from Huntington’s.
“For me, speaking about it was very normal,” Alistair recalled. “With them having the first-hand experience, they were able to speak about it on a level that we could understand from a young age,” he explained.
“I think all these chats did make a positive influence in our lives, because here I am at 40, and it certainly feels a lot easier to talk about it now than I think we would have found out it 30.”
“We're shining a light on the reality of Huntington's - where it's been in the dark in the past, and where it's going in the future.”
Although he describes himself as being at a “very early stage” of his own journey with Huntington’s, Alistair admits the disease has already affected his life.
“I’d say I probably struggled socially” he said “But I've been quite fortunate because I've had a strong support group of friends and family around me.”
Hope on the horizon
Recent research offers new hope. A new gene therapy has been shown in early trials to slow the progression of Huntington’s disease by up to 75%.
The therapy, which is delivered directly into the brain, is designed to switch off the faulty gene that causes the condition.
Experts caution that larger trials are needed, but the breakthrough represents the most promising step yet toward a treatment that could transform lives.
Alistair says the development has been incredible to witness.
He added: “We're shining a light on the reality of Huntington's - where it's been in the dark in the past, and where it's going in the future.
“Before that, certainly not as many people know about it - it's great that it's in the spotlight now.”
A symbolic goal, a real impact
Alistair’s fundraiser is also a tribute to his mother, Anne, whose strength and openness inspired him to face the condition with courage.
“This fundraiser is as much in her memory as it is about the future,” he said.
In his JustGiving page, he wrote: “It’s a symbolic target, but more importantly, it represents the impact we can make together.
“Every contribution helps fund care, advocacy, and research - and brings us closer to a future where Huntington’s is no longer a life sentence.”
For more information or to support Alistair’s fundraiser, visit his JustGiving page.