Michael Alexander speaks to MND Scotland chairman Lawrence Cowan and hears why his nomination for an SCVO Scottish charity award will be a ‘really personal moment’.
Before Motor Neurone Disease (MND) campaigner Gordon Aikman died in February 2017 aged just 31, his best friend Lawrence Cowan made a promise to do everything he could to help bring MND drugs trials to Scotland.
This year that promise became a reality with January seeing the launch of the UK’s biggest MND drugs trial, thanks to the many fundraisers, researchers and leaders in the MND community.
It’s an achievement that has resulted in Lawrence being shortlisted for an SCVO ‘Charity Champion’ award because of everything he has done both personally and professionally in the fightback against MND.
Personally, Lawrence has helped raise over £700,000 for cutting-edge research, and during his leadership as MND Scotland’s chairman, the charity achieved its highest income to date and invested £1.5 million into the pioneering drugs trial MND-SMART – the largest investment into research the charity has ever made.
But if the 35-year-old Dunfermline-based father of two does win the Charity Champion award when the results are announced on Friday, it’ll be a particularly emotional moment given that his friend Gordon won the very same award in 2016 just months before the terrible disease claimed his life.
“It would be pretty emotional – a really personal moment,” Lawrence tells The Courier with a lump in his throat.
“It would be huge. It would be lovely to know that his legacy is still alive.
“I think personally speaking it would be fantastic because it was a category Gordon won – he’ll be there on my shoulder on the night.
“He’s always there with me in some capacity. I think about him so much.
“But I also think it’s just incredible to see a really strong array of people nominated from the MND community.”
Growing up in rural Aberdeenshire, Lawrence attended Ellon Academy before studying politics and French at Edinburgh University.
He spent a bit of time teaching in Normandy, did an internship in Paris then caught the political bug while working as political assistant for Labour MEP David Martin at the European Parliament in Brussels.
It was while working for Labour MSP Sarah Boyack at the Scottish Parliament, however, that he met and became friends with Gordon Aikman, who worked as a researcher for the Better Together campaign.
Gordon was terminally diagnosed with MND just three months before the Scottish independence referendum in September 2014.
He went on to form the high-profile Gordon’s Fightback campaign which successfully lobbied for NHS Scotland to double the number of specialist nurses for the disease and raised over £500,000 for research into a cure.
During this period Lawrence and his wife Joanna did everything they could to support Gordon with his fundraising and to offer whatever practical support they could on a personal level with meals etc.
Their four-year-old son Fergus was even given the middle name ‘Gordon’ in tribute to their friend.
But as Gordon’s condition deteriorated, it also gave them a terrible, human insight into the cruel nature of MND which steadily shuts down the body.
It’s this first hand experience, and how powerless they’ve felt, which drives Lawrence on in his role with MND Scotland, trying to help others, every day.
“It’s a real personal thing – I absolutely hate this disease with everything that I have,” explains Lawrence, whose day job is director of communications and fundraising for Chest, Heart, Stroke Scotland.
“That’s what drives me that one day there will be a treatment.
“MND is one of those conditions where the grieving process starts when the person is still alive.
“Gordon was very clear that he didn’t have long to live.
“You can’t really face that sort of grief or emotion alone so having a charity like MND Scotland was essential to my personal way of dealing with that grief but also channelling it into something good.
“Gordon was very clear about what he wanted to do – what he wanted to change.
“It was a privilege to help him with that campaign but also to be involved in a charity that has made such a difference to people.
“That’s why I’m still involved with MND Scotland – what they did for Gordon and what they’ve done for me personally has been absolutely exceptional. I’ll never forget it.”
Key, says Lawrence, is making sure that future generations have a better experience of not experiencing MND through research.
But he also wants to make sure that people when they do suffer are cared for properly, and to keep raising awareness.
He adds: “With a condition like MND you have to dig in to make the progress happen. As a community and as a movement we’ve made giant leaps over the past five, six years in knowing more about the disease.
Drug trials was the big dream as a big step towards understanding the disease better and potentially finding treatments.
“We are at that stage now but it took a lot of people not only losing their lives but family members raising an awful lot of money to make that happen.
“That’s why what we achieved this year with drug trials is so monumental.
With this trial we are not only giving people hope but we are closer to understanding some of the elements of potentially treating the disease.”
Amongst the other 45 finalists on the SCVO shortlist are MND charities My Name’5 Doddie Foundation and Euan’s Guide, who have also been shortlisted for awards.
The My Name’5 Doddie Foundation, which has been nominated for Charity of the Year, was founded by rugby legend Doddie Weir OBE.
Since his diagnosis in 2016 he has spent his time raising awareness of the disease by sharing his story and raising funds to find a cure.
The foundation has also donated £280,000 to MND Scotland’s grants programme, to help families in Scotland who are struggling financially because of MND.
Euan MacDonald, also shortlisted in the Charity Champion category, was diagnosed with MND in 2003 and driven to help find a cure, he established the Euan MacDonald Centre for MND Research.
This centre at Edinburgh University is home to the clinical drugs trial MND Scotland helped fund.
As a powerchair user, Euan also founded the charity Euan’s Guide, a disabled access review website which gives disabled people the information they need to visit places with confidence.