Euan leaves behind a powerful medical legacy of MND research - Angus Robertson

Euan MacDonald with sister Kiki . Picture: Fife Photo Agency -

Through his tireless advocacy for those with MND he helped reshape the landscape of MND research and support. I was lucky enough to know Euan and his loving family.

Born in Sheffield in 1974, Euan grew up in Edinburgh and studied at both the Universities of St Andrews and Edinburgh, before beginning a career in investment banking. Diagnosed with MND at the age of 29, Euan's personal battle with the disease did not diminish his spirit. Instead, it fuelled his commitment to improving the lives of others.

Alongside his father, Donald MacDonald, Euan co-founded the Euan MacDonald Centre for MND Research at the University of Edinburgh in 2007. This centre has grown into an internationally recognised hub of over 250 researchers across Scotland, focusing on ground-breaking research from basic science to clinical trials.

One of the centre’s most notable achievements is the MND-SMART trial, the largest-ever drug trial for MND in the UK, which holds promise for new treatments. Beyond the ground-breaking MND-SMART trial, the Euan MacDonald Centre has been involved in several other innovative projects under Euan's guidance. One such project is the development of SpeakUnique, a technology that allows people with degenerative conditions to preserve their voice identity.

The Centre has also worked on understanding the genetic basis of MND, identifying new biomarkers, and exploring the potential of stem cell therapies.

Another hugely impactful initiative of the centre is the CARE-MND platform designed to empower individuals living with MND in Scotland by giving them a direct voice in shaping clinical care and participating in research initiatives. It enables comprehensive auditing of MND care across the nation and manages the Scottish MND Register. With over 95 per cent of people with MND in Scotland consenting to be included, this register allows researchers to anonymously analyse patient data, enhancing the understanding of MND and improving care standards throughout Scotland.

Beyond his contributions to medical and scientific research on MND, Euan placed great emphasis on tackling the practical impediments to those with MND and other accessibility-limiting disabilities.

Together with his sister Kiki he co-founded Euan’s Guide, a charity that provides accessibility reviews for venues across the UK, significantly improving safety and freedom for people with disabilities. Not only has the Euan’s Guide opened up parts of towns and cities that had previously been inaccessible to thousands of wheelchair users—a particularly important thing to do to make our festival city available to as many as possible—it has gone a long way to making the culture sector more cognisant of disability issues in general.

To make all this happen, Euan, his family, friends, and fellow campaigners have raised millions. The relentless dedication of all to do this is extraordinary and will no doubt continue for years to come.

As director of the Euan MacDonald Centre and Professor of Neurology and Director of the centre, Siddharthan Chandran, said, the common thread that ran through all of Euan’s work was the “courage, selflessness, ability to galvanise and inspire people to come together, to work with one another to make a difference.”

Euan was devoted to his family who loved him dearly. To them, I offer my deepest sympathies at this difficult time.