Semi-retired surveyor Alex Wilson from Edinburgh is ready to dance his socks off for people with Huntington’s disease – hot on the heels of completing his first London Marathon and raising vital funds to help ensure families have the specialist support they need.

The 59-year-old lost his much-loved dad to Huntington’s disease and watched his father’s physical and mental health deteriorate at a time when there was little support for families trying to cope with its devastating impact.

That childhood experience fueled Alex’s determination to do what he can for other Huntington’s families by fundraising and sharing his story as part of Huntington’s Disease Awareness Month in May.

Having already completed the London Marathon last month with daughter Kate (29) dressed as Nintendo legends Super Mario and Luigi, Alex is now preparing to take on Dance 100. The Scottish Huntington’s Association five-hour sponsored dance challenge is being held in George Square, Glasgow, on Sunday 14 May and this time Alex will be joined by his other daughter Chloe (25) and his sister Sharon.

“The London Marathon was amazing, especially because I was running with Kate who first suggested that we do it together. It was her idea and without her I don’t think I would ever have done it,” said Alex.

“We loved the atmosphere and the music, and the crowds went wild when they saw our Mario and Luigi outfits. We got lots of high fives as we ran.”

The costumes were suggested by Kate (29), who works in advertising and marketing and was taking on her first marathon.

“We wanted to stand out for Scottish Huntington’s Association and Kate went above and beyond with her fundraising. We raised more than £4000 and most of that was by Kate. I’m extremely proud of her for doing so much and for training so hard. At one point she had an ankle injury that needed physiotherapy but even that didn’t stop her.

“I hadn’t run a marathon for more than 30 years and it was my first time in London so it was an adventure for both of us. We were both very emotional crossing the line with a time of just over five hours.”

Now Alex is limbering up for Dance 100 in Glasgow – and he’s making that a family event too.

Alex added: “My other daughter Chloe said I had no chance of getting her to do a marathon so she’s coming to Dance 100 instead. I love dancing as much as I love running and we’ll raise much-needed awareness about Huntington’s disease and how it impacts families across Scotland, including my own.

“I’ve seen first-hand how Scottish Huntington’s Association supports families and the way the charity is working to raise awareness and reduce the stigma that even today continues to surround the disease. Too many people don’t know about Huntington’s and that only adds to the challenges families face.

“I was 14 when I found out about the disease and it was difficult to watch it overtake my dad. He became more reclusive and had significant physical and mental health symptoms. As the oldest of four children, I felt it was my responsibility to help Mum care for my dad and my siblings. Unfortunately, Dad was only 47 when he passed away.”

Huntington’s disease is caused by an inherited faulty gene that damages the brain, leading to complex physical, mental health and cognitive symptoms. People with the disease can lose the ability to walk, talk, eat, swallow, and make rational decisions, resulting in the need for 24-hour care.

A loss of control over movement causes repetitive jerky movements and impairs balance and mobility. Early onset dementia, behaviour changes, and reduced ability to make rational decisions, plan and organise is also common, while serious mental illness such as depression, anxiety and, in some people, psychosis, can develop.

The dreadful toll on families is compounded further by the reality that each child of an affected parent is at 50% risk of inheriting the disease. Alex’s brother Graham has Huntington’s and Alex is at risk of developing it in the future.

“I haven’t been tested for the faulty gene so I don’t know if I’ll have Huntington’s at some stage in the future. I was going to find out a few years ago but just as I received my appointment, I discovered that I needed a major operation for a complete knee replacement. That was enough to deal with, so I chose to have the surgery and leave the test. Now I have a titanium knee and I can run, keep fit – and dance – without being in pain.

“I’ll be in fancy dress again for Dance 100 and am looking forward to being part of such a unique event with other families from the Huntington’s community. We’re going to dance to 100 songs and make sure that everyone sees us that day!”

Scottish Huntington’s Association is the only charity in Scotland dedicated exclusively to supporting the Huntington’s community. It does this through a network of Huntington’s Disease Specialists, Youth Advisors and Financial Wellbeing Officers in addition to working towards improved specialist services for families, regardless of where in Scotland they live.

To find out about Huntington’s disease, the work of Scottish Huntington’s Association and how to be part of Dance 100 on Sunday 14 May in Glasgow, visit hdscotland.org/Dance100