'A special man whose legacy will only grow' - Tributes as MND sufferer Euan MacDonald dies at 50

Euan MacDonald has died at the age of 50Euan MacDonald has died at the age of 50
Euan MacDonald has died at the age of 50 | Callum Bennetts
Euan MacDonald has died at the age of 50, 21 years after his diagnosis with motor neuron disease

Tributes have been paid to an “extraordinary” champion for disabled people who has died aged 50, 21 years after his diagnosis with motor neuron disease. 

Euan MacDonald MBE, and his father Donald MacDonald CBE, set up an internationally recognised centre for MND research at Edinburgh University following Euan’s diagnosis at the age of 29.

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Living in Edinburgh with his wife and sons, he and his father, along with sister Kiki, then launched the disabled access review website Euan’s Guide in 2013.

The site has been credited with helping to open up parts of towns and cities that had previously been inaccessible to thousands of wheelchair users.

Siddharthan Chandran, MacDonald Professor of Neurology and director of the Euan MacDonald Centre for Motor Neuron Disease Research, described him as “an extraordinary man”.

He said: “Through his vision, advocacy and leadership brought hope and helped transform the lives of countless people living with MND and other disabilities.

“Euan and his father Donald established, through a philanthropic gift in 2007, the Euan MacDonald Centre for Motor Neuron Disease Research at the University of Edinburgh.

“As a direct result of this far-sighted investment, Scotland is now a leading global player in MND research from discovery science to clinical trials. This includes the landmark MND-SMART trial, the largest-ever drugs trial for MND in the UK.”

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Euan MacDonald, whose work helped transform the lives of thousands of disabled people, has died at the age of 50. Picture: Lisa FergusonEuan MacDonald, whose work helped transform the lives of thousands of disabled people, has died at the age of 50. Picture: Lisa Ferguson
Euan MacDonald, whose work helped transform the lives of thousands of disabled people, has died at the age of 50. Picture: Lisa Ferguson | Johnston Press

Inspired by one of Mr MacDonald’s own ideas, the centre established art speech technology - SpeakUnique - that allows people to communicate in a voice that sounds like their own when natural speech is not possible.

The process is only possible thanks to donors to create a library of voices.

In 2016, he said: “Patients with a progressive disease like MND have to cope with a plethora of changes to their lives. The prospect of losing your voice can be daunting.

Having to use a voice that sounds nothing like you to make yourself heard exacerbates that. It was my own anxiety about losing my voice which led me to start investigating what options are available.”

He added: “If I can make one request, it’s for people to come forward and donate their voice.”

Prof Chandran described Mr MacDonald as “very much a free spirit”.

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“The common thread that runs through these three remarkable initiatives are his courage, selflessness, ability to galvanise and inspire people to come together, to work with one another to make a difference,” he said.

“Euan was a special man, who will be deeply missed but whose legacy will only grow through all those he touched.

“Our thoughts are with his family and friends.”

Paul Thompson, director of fundraising at MND charity My Name'5 Doddie Foundation, said: "We're extremely sad to hear this news.

“Euan has been a huge figure in the MND community, in Scotland and far beyond. The Euan MacDonald Centre has been an integral part of the picture for MND research since day one. "The determination that Euan faced this disease with has been so important to so many people. The MND community has lost another powerful advocate, but the legacy he leaves is enormous.

“Our thoughts are with Euan's wife and family at this very difficult time."

In a statement, the Euan MacDonald Centre said: “Euan sadly passed away on 21st August 2024, aged 50. He is greatly missed by us all. 

“We will uphold Euan’s remarkable legacy and do our utmost to reach the day when we can slow, stop and ultimately reverse motor neuron disease.”

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