Mad giraffe turns guinea pig as Doddie Weir continues to defy odds in MND fight

Doddie Weir might be a bit bigger than the average guinea pig, being a lofty 6ft 6in tall, but that’s the latest role the Borders rugby legend is taking up in a bid to continue keeping motor neurone disease at bay.

Friday, 17th January 2020, 12:29 pm
Updated Friday, 17th January 2020, 12:44 pm
Borders rugby legend Doddie Weir. (Photo by Eamonn M McCormack/Getty Images for BGC Partners)

The former Scotland international is already defying the odds simply by being alive over three years after being diagnosed with the incurable muscle-wasting condition, and he’s now hoping to boost his chances of carrying on doing so by taking part in one of the biggest clinical drug trials of its kind ever.

The 49-year-old, of Blainslie, is among hundreds of MND sufferers expected to take part in a UK-wide test of both new and existing drugs being led by researchers at Edinburgh University.

Called MND-Smart, it will, unprecedentedly for such trials, put multiple treatments to the test simultaneously in the hope of identifying effective medicines more speedily.

Suvankar Pal, Lawrence Cowan and Euan MacDonald, co-founder of Edinburgh's Euan MacDonald Centre for MND research, at the launch of the MND-Smart trials. (Photo: Callum Bennetts)

It’s being funded by the former Melrose and Newcastle Falcons star’s charity, the My Name’5 Doddie Foundation, along with MND Scotland and the university’s Euan MacDonald Centre, one of three academic institutions involved.

Doddie, diagnosed with MND at the end of 2016, said: “The support we have received since we launched the foundation has been incredible and has made it possible for us to invest in this exciting new trial.

“MND-Smart gives patients some hope, and that is what I have campaigned for since I received my diagnosis three years ago.

“We are committed to helping find a cure for MND, and now patients can be directly involved in that endeavour.

“I’m going to be part of the trial, and I want to reach out to everyone else who has MND to register for the trial because, at the moment, there is nothing there on the plate for anyone who has got MND, so it’s an exciting time ahead.

“It’s a great thing to be happening in Scotland, and every patient of MND now has a positive step.

“I think 2020 will be an exciting time in the fight against MND.”

MND Scotland chairman Lawrence Cowan agreed, adding that he wished his late pal Gordon Aikman, an anti-Scottish independence campaigner killed by the condition in 2017, had been given the chance now being taken up by Doddie and potentially hundreds of others.

Launching the initiative, he said: “Today is a historic moment in our fightback against MND, and, because of the incredible generosity of our supporters, MND Scotland has invested £1.5m in MND-Smart.

“MND killed my best friend Gordon Aikman so suddenly I never got a chance to say a proper goodbye, but I did make a promise to him that I would fight for everyone to have access to drug trials.

“I wish he was here to see this day.

“This is one of the biggest MND trials the UK has ever seen and it’s open to almost everyone with the disease.”

MND-Smart co-investigator Suvankar Pal added: “We’re very excited to be launching this trial.

“It gives real hope to people with MND across the UK.

“We’re hugely grateful to the people with MND who have helped us design the trial, and we think their involvement will mean that far more people will be able to take part.

“I would also like to thank our key strategic partners, and specifically MND Scotland, alongside all the donors and fundraisers who have made this possible.”

MND sufferers are invited to sign up to the trial at www.MND-Smart.org

The new trial is billed as being adaptive as the researchers involved can modify their approach according to emerging results.

New drugs can be added once the trial is under way, and medicines that prove ineffective will be dropped.

Researchers will initially test drugs already licensed for use to treat other conditions.

That repurposing of existing drugs will cut out some of the lengthy approval processes required for new drugs, potentially knocking years off the time it would take for any medications found to be effective to be made available via the NHS.

Doddie’s foundation, launched after the lock, famously likened to a mad giraffe by late sports commentator Bill McLaren, revealed his MND diagnosis in mid-2017, has since raised more than £5m for research into treatments for the condition.