Scotsman Obituaries: Euan MacDonald, activist whose MND diagnosis spurred him on to become force for change in disability community

Euan MacDonald encouraged MND researchers to share information on the condition (Picture: Ian Potter)

At 29, an accomplished skier, keen footballer, golfer, hillwalker and rugby player, Euan MacDonald was young, fit and in the prime of his life.

Then he noticed something slightly odd but seemingly innocuous: a loss of power in his thumb while trying to change gear on his bike.

Within two months the energetic adventurer was diagnosed with motor neurone disease (MND), a progressive and incurable condition that, for most patients, proves fatal within five years.

Euan, who had to give up a lucrative job in investment banking soon afterwards, survived for a further two decades, not only displaying extraordinary longevity but leveraging his situation to become a unique force for good within the MND community and wider disability spectrum.

Along with his father Euan founded an eponymous centre for MND research and, with his sister, set up an award- winning disabled access charity. He was recognised with an MBE for the work he carried out despite losing his voice, using a wheelchair and a ventilator. He regarded himself as fortunate, his disease had progressed slowly: “I am one of the lucky ones,” he insisted.

Born in Sheffield to Louise and Donald MacDonald, the family soon moved to Edinburgh, where he was educated at George Watson’s College and then at Glenalmond College in Perthshire. He went on to study Medieval History at St Andrews University and Law at Edinburgh University, subsequently working in London for investment bank Dresdner Kleinwort.

A sports lover and sportsman, Euan enjoyed a variety of outdoor pursuits and bagged many Munros but, just weeks after that incident while out on his bike in 2003, his life changed irrevocably with the MND diagnosis. Remarkably, it did not curtail his courage, vision or enthusiasm for getting things done – he even continued to bag Munros. And the following year he married his wife Liz, whom he had met at St Andrews.

Four years after diagnosis he and his father founded the Euan MacDonald Centre for MND Research, kick-started with a philanthropic gift from the family. Both had resolved to do what they could to raise the profile of MND research in Edinburgh and further afield but the decision to set up the centre was prompted by a visit to a clinic in the United States where patients were seen by neurologists who were also researchers and who all shared their findings with colleagues.

Euan returned home to discover that there were about 20 researchers working on MND in Scotland but who didn’t seem to be connecting with each other. The idea of having a research centre that brought those working on the disease together, and where patients were also connected to the work, seemed compelling. Euan and his father, who had previously been made a CBE for his support for the arts and music, both had an investment background and approached a group of key MND researchers at the University of Edinburgh. Today there are more than 200 researchers working at the centre, based at the university, where Euan continued to be involved until his final weeks.

Describing Euan as an extraordinary man and a free spirit who helped transform the lives of countless people living with MND and other disabilities, Professor Siddharthan Chandran, Director of the Euan MacDonald Centre said, as a direct result of the family’s far-sighted investment, Scotland is now a leading global player in MND research, from discovery science to clinical trials.

That work includes the landmark MND-SMART trial, the largest-ever drugs trial for MND in the UK, and the development of SpeakUnique, a university spinout that uses state-of-the-art speech technology to allow people to retain their identity and communicate in a voice that sounds like their own when natural speech is not possible. The initiative was inspired by Euan, whose own anxiety about losing his voice led him to investigate the options available. The first voice created was a blend of his own and that of his brother Angus.

Once again it was his own experience of living with disability that was the catalyst for Euan’s Guide, a website reviewing disabled access. He had wanted to go out somewhere different for a drink but couldn’t find any information on accessible bars in Edinburgh. He had also had some terrible experiences, including an instance when, having been sold accessible tickets to a venue, the manager offered to carry him up the stairs. He declined.

However, Euan already had lots of information about local venues with disabled access he had visited and, recognising that there must be thousands of similar people having the same issues, decided to share his knowledge. His sister Kiki simultaneously had the same idea, and a website to benefit the whole community was the result. Founded in 2013, it shares disabled access information, helps to make thousands of accessible toilets safer and runs the UK’s largest access survey.

“The common threads that run through these three remarkable initiatives,” says Prof Chandran, “are his courage, selflessness, ability to galvanise and inspire people to come together, to work with one another to make a difference.”

Those attributes are also testimony to his attitude to life. He and Liz had two sons and he lived for his boys, displaying a huge lust for life and perpetually taking an interest in others, putting them ahead of himself. He was also generous in his interactions, despite being non-verbal for years and relying on a computer to communicate. When he received his MBE in 2009 it was with his trademark humility.

Euan lived with the hope that a cure for MND would eventually be found, and made it to his 50th birthday – just. He died a week after that milestone and just a few weeks after the death of his beloved son Finlay. He his survived by his wife Liz, son Alec and extended family.

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