When civil servant Liam Anderson signed up for the London Marathon in support of the Huntington’s community, he had no idea how much it would inspire his own family.
The 31-year-old tried unsuccessfully for 10 years to win a ballot place in the world-famous run – then Scottish Huntington’s Association stepped in with the offer of a charity spot.
“It made total sense to do it for Scottish Huntington’s Association because Huntington’s disease has been part of our lives for so many years,” said Liam (31), who lives in Edinburgh with his partner, Eilidh.
“My mum told me it was in our family when I was 18; until then I’d no idea and didn’t know anything about Huntington’s disease. Since then I’ve never hidden it from my friends and my immediate family is quite open, however it’s been more of a taboo subject amongst some of our wider family.”
But things were to change when Liam announced he was running the London Marathon for Scottish Huntington’s Association.
“That definitely helped to cast light on something that had not been talked about in the family,” he said.
“Everyone got on board, we are a close family and if one of us needs something, everyone shows up. This was the first time we had done something for Huntington’s though.”
It was only after Liam’s gran passed away in the early 1990s that a post-mortem examination revealed that she had undiagnosed Huntington’s disease. It meant that Liam and his mum are also at risk of having inherited the condition.
“My grandma was in hospital for many years and died the year after I was born. She was taken into hospital when my mum and her siblings were very young, and they didn’t really see her after that. It was too hard and too sad,” said Liam.
“My grandma was loved and she was lost to her family because of Huntington’s disease. Later on, her brother also was diagnosed with the disease and ultimately passed away with this too. Fundraising for Scottish Huntington’s Association gave us a shared purpose, a way to honour our grandma’s memory, and the opportunity to raise awareness about the disease and its impact.”
The family set about organising a fundraising event to get Liam started towards his initial £2000 target.
“It was pretty daunting, so my Auntie Fi came up with the idea of holding a race night,” he said.
“Running the London Marathon was my dream so I was training hard while everyone was making sure it was going to be a great event that raised as much as possible. My younger sister Kathryn was our fundraising manager, she did a great PR job on social media – we were hoping for 50 people and ended up with 140.
“We shared a lot of stories and information about the disease on social media and when we spoke about Huntington’s disease and why we were fundraising, people were happy to donate and buy tickets.”
The race night raised more than £2000 and with the support of his family, friends and work colleagues Liam has now pushed his total to over £4500. He completed the London Marathon in a personal best time of 3 hours 30 minutes and then, just a few weeks later, travelled to Yosemite in the US for a half-marathon with friends he met while travelling through Asia in 2015.
“Running both marathons and raising so much money has been an incredible experience, however what stays with me most is having the support of my family and the way everyone helped. They’re the ones who got me over the line,” said Liam.