Euan MacDonald, motor neurone disease fundraiser and disability champion

Euan MacDonald was a 29-year-old investment banker earning a six-figure salary when one day in 2003 he noticed there was no power in his thumb while changing gear on his bike. “It seemed innocuous at the time, but two months later I was diagnosed with motor neurone disease,” he recalled. At first life was up in the air. “But I am very lucky to have the support of my family and so many good friends. I’m determined to fight on.”
Doing just that he returned to Edinburgh, the city where he had been raised, and threw himself into not only championing research on the condition but also supporting people with a variety of disabilities. Despite an initial prognosis of between six months and two years, he spent 21 years cheerfully raising money, campaigning for greater awareness of MND and inspiring others with the condition.
A £1 million donation from Donald, his businessman father, helped to establish the Euan MacDonald Centre at the University of Edinburgh, bringing together a network of more than 200 researchers from across Scotland. The father and son were also involved in creating the Voicebank Research Project (now called Speak Unique), which allows people who lose their voices to progressive disease to create personalised synthetic voices, and of which he was a client.
MacDonald and his sister Kiki were behind Euan’s Guide, a comprehensive online directory of venues with disabled access. “I wanted to go out for a drink with some friends. I wanted to go somewhere new and I couldn’t find any information on accessible bars in Edinburgh,” he told Euansguide.com. The aim was, he said, to remove the fear of the unknown. “If I can read some reviews from people who have similar accessible issues, I’m much more likely to trust them than a venue website which just displays a disabled badge.”
Full of humour, he regaled friends with tales about his experiences, both good and bad. “The worst was a well-known venue in Glasgow (that shall remain anonymous but that should know better) that had sold me accessible tickets. When myself and my carer arrived, the manager offered to carry me up the stairs — when I politely refused I was offered £200 to go away,” he wrote.
By contrast, he was impressed by the now-defunct T in the Park music festival in Motherwell. “Each year the staff strive to make the experience as easy (and fun!) as possible and actually listen to our suggestions,” he wrote. “Issues that we’d pointed out on Friday night were fixed by the time we returned on Saturday. And the music isn’t bad either …”
Euan James MacDonald was born in Sheffield, South Yorkshire, in 1974, the third of four children of Donald MacDonald, co-founder of the City Inn hotel chain and life president of the Scottish Chamber Orchestra, and his wife Louise. They survive him with his siblings, Angus, Fiona and Kiki.
The family moved to Edinburgh, where he played rugby at George Watson’s College before continuing his education at Glenalmond College in Perthshire. At the University of St Andrews he switched to football, played golf, took up skiing and started running, on one occasion completing a marathon over a self-devised route taking in Dundee, St Andrews and Elie in Fife.
After reading law at the University of Edinburgh he joined the investment bank Dresdner Kleinwort in London. “The thing I loved about the City was being involved right in the middle commercial hub of the country,” he told the Daily Mail. He lived in Clapham, south London, enjoying five-a-side football, cycling and whisky.
At St Andrews he had met Liz O’Neill, an American student who later worked in investor relations. They returned there for their wedding less than a year after his MND diagnosis and spent their honeymoon in Mauritius. She survives him with their teenage son, Alec, whose brother, Finlay, died in June.
MacDonald went on to explore alternative medicine with Hratch Ogali, the controversial healer. “Who knows if I would be better, worse or the same had I not gone to see Hratch? What I can say with certainty is that with Hratch’s help I am living without fear,” he said.
Disability did not prevent him from bagging dozens of Munros and trying his hand at bungee jumping and skydiving. He undertook a road trip from Chicago to Boston and New York, visited New Zealand to watch the British Lions and joined the Tartan Army when Scotland played in the rugby World Cup in Paris.
Closer to home he cheered for his beloved Hibs at Easter Road, and in 2005 he drew inspiration from meeting the former Celtic footballer Jimmy Johnstone, who was living with MND. “He was great. He still had his sense of humour,” MacDonald told Edinburgh Evening News after Johnstone’s death in 2006. “Obviously, there are physical challenges but a lot of it is mental in trying to overcome the emotional side of the lack of ability to do certain things. He seemed to have kept his lively personality — that’s what impressed me most.”
Like Johnstone, he threw himself into fundraising for MND research, helping to organise a charity dinner at Prestonfield House Hotel for the Scottish MND Association. Work began the following year on the Euan MacDonald Centre, based next to the Royal Infirmary, and in 2018 the centre received a financial boost from the My Name’5 Doddie Foundation, founded by the Scottish rugby player Doddie Weir who also had MND (obituary, November 28, 2022).
During the Covid pandemic MacDonald’s family moved out so that his four care workers could move in. Writing in The Times during Carers’ Week in June 2020 he said this meant them having to isolate from their own families for several months. “I hope that this crisis will change people’s perceptions of carers and care workers for good, not just during Carers’ Week, with an understanding and appreciation for their work,” he added.
Euan MacDonald MBE, disability campaigner and founder of Euan’s Guide, was born on August 14, 1974. He died of motor neurone disease on August 21, 2024, aged 50