A towering presence both on and off the field, Scotland rugby legend Doddie Weir’s charisma, charm, and determination left an indelible mark – and, perhaps, a few bruises – on many who encountered him.
He was the ‘mad giraffe’ – so said legendary rugby commentator Bill McLaren of one of his breathless charges up the pitch, oval ball gripped tight, his dynamic speed at odds with his awkward 6ft 6ins frame.
Off the pitch there was that beaming smile, the colourful suits, a deep-throated chuckle and ‘crack on with it’ attitude even in the face of the most brutal battle imaginable.
Motor Neuron Disease (MND) may have done its worst to rugby’s gentle giant but he’s never far from the rugby community’s thoughts: this weekend it will feel his loss once again as familiar faces of the sport gather.
But it has also mobilised a remarkable movement of research, of bold collaborations and daring ideas in Doddie’s name that has ignited real hope that the horrors of MND might be conquered.
At the My Name’5 Doddie Foundation, his spirit, determination, and fight live on.
“There’s a little 'Doddie' voice in all of our ears, all of the time,” says Nicola Roseman, the charity’s CEO since taking over from broadcaster Jill Douglas, now the Foundation’s patron.
“His spirit, and the way he embraced what was happening and got on with things resonates around the team.
“For all his death impacted everyone, we felt even more determined to step up as much as we could.
“He was such a large part of the Foundation, and he remains so.”
The Foundation launched within weeks of the Scotland cap’s 2017 diagnosis. As Doddie’s friends gathered to offer support, he selflessly suggested his colourful profile might instead become a beacon of hope to others facing an MND diagnosis.
“To have no new drugs in 22 years for a terminal illness, and for there to have been no trials in Scotland to try to find a cure, is frustrating,” he said at the time.
“I'm trying to see if I can make a difference. Hopefully, I can in some small shape or form.”
Since then, powered by fundraisers around the world, the charity has ballooned.
By November last year, two years since Doddie's death aged just 52, it had committed more than £18 million to MND research and backed more than 40 pioneering projects exploring all stages of the disease.
A cure might be a distant dream, warns Nicola, but huge strides are being made in research, collaboration, and innovative approaches to cracking MND’s mysteries.
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“There are definitely good things happening and we are encouraged. But it’s a long path,” she cautions.
“Patients living with MND have told us loud and clear while they want hope, they want it to be realistic.
“False hope is no good.”
So, there’s no timescale on when a cure might come, and for many living with MND, no magic bullet just around the corner.
But there have been major milestones: the Foundation played a crucial role in funding and supporting the establishment of the MND Research Institute and has been instrumental in holding the UK Government to account on its pledged £50m investment in MND research.
Its four strands of research grants, overseen by independent academics, clinicians, industry representatives and people affected by MND, are playing a critical role in chipping away at it.
Spanning lab-based “pre-clinical” research to clinical studies that test the most promising treatments, they place the Foundation at the helm of driving forward new understanding of MND and how those affected might live longer.
Its Discovery Network Awards provides support to help researchers better understand the biology of MND and spot new therapeutic targets.
Likewise, the Foundation’s Advancing Treatments Award supports research into early-stage development of new treatments to slow, stop or reverse MND disease progression.
The Catalysing a Cure Research strategy was launched in early 2023. Led by Director of Research Jessica Lee, it has already directed millions of pounds to early-stage projects exploring new treatments.
And the Clinical Research Infrastructure Award aims to ensure clinical trials across the UK have the necessary resources to operate effectively.
The Foundation has invested in gene therapy studies and in research that uses stem cells donated by MND patients to improve understanding of the disease’s biology.
Elsewhere, researchers are looking at neurofilament light chain, a protein found in neurons which indicates the progress of MND to see how it can help spot treatments which may work faster and more effectively.
Meanwhile at Edinburgh University, a stone's throw from Murrayfield, researchers backed by the Foundation and MND Scotland are pioneering the first clinical study into a drug called Terazosin.
Typically used to treat enlarged prostates and high blood pressure, studies in fish, mice and stem cell models suggest it protects against the death of motor neurons by increasing their energy production.
Also in Edinburgh, MND-SMART is a pioneering clinical drugs trial exploring three drugs that is also enabling hundreds of MND patients take part in tests.
The Foundation also supports EXPERTS-ALS, a global programme bringing together 11 UK centres aimed at speeding up potential MND treatments.
At the charity’s heart, meanwhile, is a deep commitment to people living with MND: its March CORE event in Edinburgh will bring them together with scientists to learn about new research.
Its potentially life-changing work is made possible by countless pairs of feet pounding pavements, powering pedals, climbing hills and crossing deserts, all in the name of Doddie.
“The inventiveness of fundraisers and their devotion to Doddie never ceases to amaze,” says Nicola.
“We thank them every day for their creativity, support and sense of fun, for the love and hope that evokes memories of Doddie.”
Alongside the headline grabbing fundraisers such as in 2023 when Kenny Logan led a team of celebrities including Ally McCoist on a 700-mile endurance challenge from Edinburgh to Paris, has been Doddie Aid, the personal exercise challenge that is now a January ritual for tens of thousands.
Cyclists take part in fundraising for My Name'5 Doddie Foundation (Image: Jamie Dougall)
Running for five weeks from New Year’s Day, participants choose a nation to represent, log their miles and support the charity while boosting their own health and fitness.
Each year ahead brings a sequence of ‘Doddie seasons’ for the Foundation: Doddie Aid in the chilly winter gives way to the Six Nations in February and March when Doddie’s bright blue and yellow tartan has been embraced by Scotland fans.
There’s cycling led by former Scotland captain Rob Wainwright: Doddie Cup 500 ride in 2022, Doddie Cup 555 Ride in 2023 and All Roads Lead to Rome in 2024 was followed this year by Doddie's Grand Tour 2025 which concluded at Murrayfield for the Ireland game having spanned 700 miles over four days.
Spring and summer bring marathons, Kilt Walks, fun runs and 5Ks. There are agricultural shows to spread the word, Doddie'5 Ride Borders cycle challenges, and countless Doddie themed golf events.
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As autumn beckons, there’s the Foundation’s Anniversary Awards Dinner, and throughout the year fundraising gatherings at home and abroad.
This is year is particularly special: the Foundation is a charity partner for The British & Irish Lions tour to Australia, and Kenny Logan has another inspiring challenge planned for the warm-up match against Argentina in Dublin.
And there are ‘ordinary’ people doing exceptional things, spanning Liverpool where the Merseyside Tartan Army plans a charity evening for the Foundation, to the Moroccan Sahara Desert, which Gordon Hannah, who once played against Doddie, will attempt to cross in the Marathon des Sables, a 250km six day race.
Some fundraisers have deeply personal reasons to back the charity. Luke Hames Brown, a doctor diagnosed three years ago with MND aged just 34, has raised more than £50,000 for it and the MND Association.
The Foundation's impact stretches across international borders too, to Australia, where rugby fan Billy Whiston plans to raising money by walking its 14,414km circumference while pushing a wheelchair, and to Hong Kong Scottish RFC which has the charity’s name emblazoned across its strips.
That’s no surprise to Nicola: she was working in Hong Kong’s financial hub in 2017 and saw how Doddie’s MND diagnosis had an instant impact on ex-pats.
“It felt like a ripple around the world: people who knew him, whether through rugby or his after-dinner speaking, just wanted to do something,” she remembers.
“There was a brilliant rugby dinner in Hong Kong that he came to. He was eloquent, charming and had a bit of a twinkle in his eye.
“He had that impact: it feels like people around the world all know of Doddie and the work he’s done.”
Having been touched by the power of Doddie, she joined ex-pats’ fundraising dinners and a sponsored trek – dubbed a ‘Doddie Gump’ - to raise funds for what was then the newly formed My Name’5 Doddie Foundation.
Once back in the UK, Falkirk-raised Nicola became the Foundation’s Chief Financial Officer in 2021, then CEO last year.
She recalls Doddie as a constant presence at the charity, even as MND took its toll.
“He came regularly to our meetings: he’d be eyeing up a cake or some bites we’d put out for our lunch meetings.
“We would get donations with handwritten notes and a personal story sent to Doddie. He wanted to see them and often he would reply to them.
“We are trying to carry on with that personal touch now, even though we’re a small organisation - we don’t want to go down the road of just sending automated replies.”
MND’s devastating impact means there can be a price to pay for being so immersed in the charity’s work.
“We are dealing with people facing such adversity… sometimes we have to take a moment to ourselves," she adds.
“It’s not all bells and whistles and happy fundraising. It’s the worst club ever, that no one wants to be part of.
“But I have never met such an incredible community.”
MND has no cure, is life shortening and often progresses rapidly, damaging and attacking the nerves so messages from the brain to the muscles no longer work.
Someone in Scotland is diagnosed with MND every two days, and the disease kills six people a day throughout the UK.
Its rippling impact strikes loved ones, friends, work colleagues, sporting teammates and, in Doddie’s case, tens of thousands around the world who saw the giant rugby hero stolen away.
“We were incredibly sad to see him deteriorate,” says Nicola. “It was hard, it is a brutal disease.
“But his spirit and the way he embraced it go on and resonate around the team.
“He decided ‘this is my lot, what can I do it make it better for other people?’
“What an incredible human being he was.”
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