Fighting a disease that kills half of its victims in just over two years is always going to be a race against time.
But that battle has been bolstered considerably with the seven-figure donation by a father and son from a family stricken by motor neurone disease.
Euan MacDonald, a 32-year-old banker who was diagnosed with MND in 2003, and his father, Donald, who founded a hotel chain, have given the money to Edinburgh University to set up Scotland's only centre of excellence dedicated to the crippling condition.
The Euan MacDonald Centre for Motor Neurone Disease Research will focus on developing more effective treatment for patients and will form part of a worldwide push to find a cure.
Once its staff has been recruited, it will build on an already strong research base into motor neurone biology at the university and benefit from a wide range of expertise in regenerative medicine and stem cell research, neuroscience, molecular medicine and genetics.
Euan, a father of two young children, was diagnosed with motor neurone disease shortly after his 29th birthday while working in London for leading investment bank Dresdner Kleinwort.
Devastated, he returned to Edinburgh with wife Liz and children Alec, one, and Finlay, two.
He said: "It was a shock. I was reasonably fit and healthy. It came out of the blue. I went to buy a bike and I noticed a loss of power in my left thumb."
A series of tests and an agonising wait followed. "When you are told it seems like the worst possible diagnosis. You are told that if it is progressive it will run its course and that is quite hard," Mr MacDonald said.
"I have been quite lucky in that it has progressed reasonably slowly. Since I was diagnosed I have managed to have a life.
"It can have a massive impact not just on the person but the family as well. I don't think the children understand. The two-and-a-half-year-old helps me with things like taking my shirt off or undoing a bottle top or something.
"He seems to have taken it in his stride. But obviously I am aware that it is something they are going to have to deal with as they grow up."
Both Euan MacDonald and his father Donald, co-founder and vice-chairman of the City Inn hotel chain and joint chairman of Caledonian Brewery, are Edinburgh University law graduates who live in the city.
They have already played a role in raising funds and awareness of MND, and it is hoped their donation will be a catalyst for attracting other support to further the work of the new centre.
Donald MacDonald, who is also chairman of the Scottish Chamber Orchestra, said: "There are virtually no effective drugs currently available to treat motor neurone disease and improved treatments are desperately needed.
"The new centre will enable scientists and clinicians to look at ways in which to improve the treatment available, with research to understand the fundamental mechanisms of motor neurones and how to prevent them from deteriorating, leading the way to improving patient care."
The centre, which will appoint a senior clinical fellow to co-ordinate its clinical and basic research, will be based next to Edinburgh Royal Infirmary. It will run alongside the university's Scottish Centre for Regenerative Medicine, which will benefit from a facility to develop stem cell lines and has stem-cell researchers already working towards medical therapies for illnesses including motor neurone disease, cancer, Parkinson's, liver disease and diabetes.
Professor Richard Ribchester, convener of the Edinburgh motor neurone disease research group at the university, said: "The generosity of the MacDonald family will enable the university to expand its existing consortium of 20 scientists and physicians involved in motor neurone disease research by creating a centre with a dedicated focus on improving the lives of those who suffer from this debilitating disease."
It is hoped the centre will become self-sufficient through funding, grants and donations within five years.
Craig Stockton, chief executive of the Scottish Motor Neurone Disease Association, said: "We hope that this exciting new development will lead to an improved understanding of the cause of Motor Neurone Disease and ultimately lead in the future to new treatments and a cure for this terminal condition."
Why are you making commenting on The Herald only available to subscribers?
It should have been a safe space for informed debate, somewhere for readers to discuss issues around the biggest stories of the day, but all too often the below the line comments on most websites have become bogged down by off-topic discussions and abuse.
heraldscotland.com is tackling this problem by allowing only subscribers to comment.
We are doing this to improve the experience for our loyal readers and we believe it will reduce the ability of trolls and troublemakers, who occasionally find their way onto our site, to abuse our journalists and readers. We also hope it will help the comments section fulfil its promise as a part of Scotland's conversation with itself.
We are lucky at The Herald. We are read by an informed, educated readership who can add their knowledge and insights to our stories.
That is invaluable.
We are making the subscriber-only change to support our valued readers, who tell us they don't want the site cluttered up with irrelevant comments, untruths and abuse.
In the past, the journalist’s job was to collect and distribute information to the audience. Technology means that readers can shape a discussion. We look forward to hearing from you on heraldscotland.com
Comments & Moderation
Readers’ comments: You are personally liable for the content of any comments you upload to this website, so please act responsibly. We do not pre-moderate or monitor readers’ comments appearing on our websites, but we do post-moderate in response to complaints we receive or otherwise when a potential problem comes to our attention. You can make a complaint by using the ‘report this post’ link . We may then apply our discretion under the user terms to amend or delete comments.
Post moderation is undertaken full-time 9am-6pm on weekdays, and on a part-time basis outwith those hours.
Read the rules hereComments are closed on this article