The word legend is often overused, but in the case of the late Scottish rugby player Doddie Weir, it’s perfectly fitting.
A truly humble gentle giant and a hero to the nation, Doddie’s stoic journey with Motor Neuron Disease (MND) has inspired thousands of people across the north and north-east of Scotland – and beyond – to don tartan jerseys, snoods, hoodies and headbands to raise funds for Doddie Aid.
Set up by his close friend and former teammate Rob Wainwright, the mass-participation event encourages people to get active for six weeks from January 1 and raise funds to help find a cure for MND.
Three months on from Doddie’s death at just 52, and thousands of people have gone the extra mile to raise money in his memory.
To mark the end of this year’s Doddie Aid, Your Life spoke to four people who are continuing Doddie’s incredible legacy.
Irene Drever
Many New Dances is Irene Drever’s positively powerful outlook on Motor Neuron Disease, the debilitating, unpredictable and incurable disease she was diagnosed with in July 2020.
Grappling with such devastating news, anyone would forgive the 59-year-old mum-of-two from Orkney for falling into deep despair.
But just like her hero Doddie Weir, Irene has shown remarkable stoicism, refusing to let the condition get her down and instead is determined to make the most of every day.
“I was obviously heartbroken and frightened when I was diagnosed but I’m absolutely determined to enjoy all the time that I have with my family,” says Irene.
“As a family, we have gone all out to be positive and to enjoy everything that we can do and forget about what we can’t do and focus on the positives.
“We’re very lucky as we’ve got so many good people around us and lots to look forward to.”
Signs something wasn’t right
It was during her weekly yoga class when Irene started to notice something wasn’t quite right.
“For a couple of years, I started to notice odd things happening with my arms and legs,” says Irene.
“At yoga in particular I was noticing that there were a few things I couldn’t do, like support myself in a plank.
“I also felt very tired which would last a lot longer than normal tiredness so my doctor referred me to the neurologist in Aberdeen, so I went down for my appointment in July 2020 and I was diagnosed then.”
Determined not to let the progressive, life-shortening illness get her down, Irene, a former primary school teacher at Papdale Primary School in Kirkwall, is making the most of life.
“One of the things I did when I was diagnosed was to change the meaning of MND to Many New Dances and that’s given us a lot of fun,” says Irene.
“It’s my motto as I feel it’s a bit cheerier.
“The most exciting dance was at our daughter’s wedding last year and we had a couple of close friends’ weddings so we danced at three weddings last year.
“We’ve turned it around.”
Inspired by Doddie Weir
Like millions of others around the world, Irene has been inspired by the late Doddie Weir and how he faced MND with humour and a positive attitude.
“Without a doubt I have been inspired by Doddie Weir, he was a force of nature – what a man,” says Irene.
“He was very positive and always had a good sense of humour about everything.
“I’m so impressed with the effort that everybody has put in to support Doddie Aid and the fundraising.”
Like Doddie, Irene is sharing her story in a bid to encourage others to join the fight to cure MND and to raise as much awareness of the cause as possible.
In fact, Irene is so determined to make a difference that she has clocked up over 100km on her exercise bike to raise funds for Doddie Aid.
“We’ve done Doddie Aid since it launched, so walked it for a couple of years and this year I can’t walk as far so I’ve used my exercise bike in the house.”
Clinical trial
The money raised by Doddie Aid has had a direct impact on Irene and her family.
“I’m on an MND-SMART clinical trial which Doddie Aid is one of the key supporters of,” says Irene.
“About 18 months ago I went to Aberdeen Royal Infirmary and I was assessed there for the clinical trials, so I’ve been on a mystery drug ever since.
“It might be the one that they’re testing or it might be a placebo but it’s just great to be a part of the research that you hope will eventually find a cure for MND, or even something to be an effective treatment or slow it down a bit.”
In awe of the way Irene has coped with MND is her husband and soul-mate Andrew and their grown-up children Ingrid, 31, and Heather, 29.
“She’s coping and she’s always more concerned about other folk,” says Andrew.
“I’m certainly very proud of her.”
Positive attitude
Forever positive, Irene says she has so much to look forward to.
“We’ve got two big birthdays in the family as my daughter Heather is 30 in June so we’re having a family holiday to Nairn to celebrate her birthday,” says Irene.
“And it’s my 60th birthday in September so we’ve got a couple of celebrations over the summer planned.”
Asked if she has any advice for others who are going through similar situations, Irene says: “Just take one day at a time and look for the good in every day.
“We have very good support from friends and family.”
Irene is also keen to thank the incredible staff at the NHS: “I would like to thank the NHS team in Orkney and in Aberdeen as they have been absolutely fantastic.”
“I would especially like to thank our MND specialist Moira Flett who is based at the Balfour Hospital in Orkney.”
Rob Wainwright
Thinking back to the last time he saw his close friend and ex-teammate Doddie Weir is a memory that the former Scottish rugby captain Rob Wainwright will cherish forever as he continues to fight for an MND cure in his memory.
“We flew him up to Coll and we had lunch in the Coll Hotel before we visited the Ardnamurchan distillery,” says Rob, who lives on the island, working as a farmer and a volunteer firefighter.
“People made a huge effort to make the trip happen and that’s because it was Doddie.
“They wouldn’t do that for you or I but they would do it for Doddie because he was a very special character.
“Keith Wood (an Irish international former rugby player) even came up from the south-west of Ireland.
“I’ve got a picture of us all lined up outside the distillery.
“Doddie wasn’t able to drink any of the whisky but he was able to sniff it.
“He had a great day out and it was very special to us.”
Fighting for a cure
Just a few months after the trip, on November 26 last year, Doddie sadly passed away aged 52 after a six-year long battle with MND.
Speaking at Doddie’s memorial service at Melrose Parish Church, Rob vowed to continue fundraising on his friend’s behalf.
“Doddie is so iconic that he’s inspired thousands of other people to go and do stuff to help solve this disease,” says Rob.
“Doddie’s not here anymore but we’re still helping him to sort it out.
“I got the opportunity at his memorial service to say that we’ll carry the flame for him.”
By his friend’s side from the start, Rob founded Doddie Aid, a mass-participation event which encourages people to get active for six weeks from January 1 to help raise funds to help find a cure for MND.
Over the last two years the event has seen over 30,000 participants cover four million miles and raise over £2 million for the My Name’5 Doddie Foundation, a charity committed to raising funds to fight Motor Neuron Disease with the vast amount of funds being invested into vital research.
“It’s an immensely satisfying thing to be involved with as it’s almost all run by volunteers,” says Rob.
“But this year we knew having lost Doddie that there was going to be a heightened interest in it and we got just shy of 37,500 people taking part which is amazing.
“I think everyone involved in it is enjoying it and I think it’s good for people’s physical and mental health and to be involved in this big virtual community.”
555-mile cycle
Last week, Rob led a tenacious team of rugby legends on a 555-mile cycle from Wales to Edinburgh’s Murrayfield Stadium to deliver the Six Nations match ball ahead of the Doddie Weir Cup.
As Patron of Scottish Rugby Union and the Motor Neurone Disease Association, The Princess Royal officially started the charity bike ride.
“We always finish Doddie Aid with a match ball ride, it’s a nice way to finish.” says Rob.
“It’s a gruelling ride but that’s the great thing about Doddie Aid as everyone can get involved, whether you want to do the cycle or do a dog walk, it all counts.
“And the support that we’ve had from so many people at the grass roots level has been massive.”
The fight goes on
Describing Doddie as a national icon, Rob says he will keep fighting on behalf of Doddie.
“Doddie is a national icon who has changed government policy and who inspires people to do all sorts of crazy things,” says Rob.
“One only needs to look now and see that there’s a Six Nations cup named after him, there’s a statue of him at Murrayfield.
“He’s a guy that has garnered so much respect.”
Lorna Duncan
Heartbreaking is the word Lorna Duncan uses to describe how she felt when she first heard the news that her former gym buddy Doddie Weir had Motor Neuron Disease (MND).
Based in Fyvie in Aberdeenshire, Lorna got to know the rugby legend while studying textiles at Heriot-Watt University in Galashiels.
“I knew Doddie as we used to go to the same gym in Galashiels,” says Lorna, an interior designer.
“I also knew his family, not very well but I knew them all.
“His boys played rugby with my son so when it was first announced that he had MND it hit hard.
“It was sad because I knew the guy and his family and I knew what a character he was.”
Watching in awe as Doddie stoically shared his MND journey with the nation, Lorna knew she had to join the fight to find a cure by signing up for Doddie Aid.
“You’re part of one big family who are all fighting towards the same thing, who have all been inspired by the big lout, the guy who had so much mischief behind him,” says Lorna.
“He had so much passion and fight that you couldn’t help but to be inspired.
“There’s a guy who was suffering and he never felt sorry for himself, he was out there fighting so you felt that to sit and do nothing was wrong.”
Forever inspired by Doddie
Involved in Doddie Aid from the start, Lorna has walked and cycled as many miles as she possibly can for the charity.
And remembering the way Doddie faced the illness will forever inspire Lorna.
“I remember bumping into Doddie at one of the boys’ rugby things and it was lovely because he was still the Doddie I knew,” says Lorna.
“Kathy, his wife, was with him, and the way he conducted himself just grabbed my heart massively.
“So many people would be embarrassed or want to hide away ashamed whereas Doddie was still Doddie and he was just like, well this is how it’s going to be.”
Olivia Bird
“We’re much closer now than we’ve ever been to finding something which could actually slow or stop the disease,” says Olivia Bird, the research programme manager at the My Name’5 Doddie Foundation, a charity set up by Doddie Weir and his friends to raise funds to aid research into the causes of Motor Neuron Disease and investigate potential cures and to make grants to individuals suffering from MND.
Launched just over five years ago, the charity has invested millions into MND research.
“In that time we’ve committed nearly £8 million to research in the UK and in Europe which is pretty phenomenal,” says Olivia.
“We’ve also given a lot of support to clinical trials and we’re really proud to say that more people than ever before in the UK can now access a clinical trial for MND.”
Vital research
Olivia says the vital research just wouldn’t be possible without events like Doddie Aid.
“Our amazing supporters have put their bodies through so much to be able to donate to research which is fantastic,” says Olivia.
“Research is expensive and getting one drug from the lab to market could take 10 to 20 years and it could also cost billions of pounds, so we’re so reliant on our supporters to keep doing what they’re doing.
“We’re just so grateful to everyone who has taken part in Doddie Aid this year, it has been hugely successful and we’re really excited to announce where we will be targeting that money in the coming months as well.
“The people raising money for us can be reassured that their donations will make a huge difference.”
The fight continues
Olivia says it’s now more important than ever that people join the fundraising drive.
“The shorter term goal is to find a treatment that will slow the disease or stop its progression, and the longer term goal is to find a cure, ultimately that is the goal,” says Olivia.
“It’s likely that there won’t be a single cure for MND because it’s quite a complex disease.”
Working for the charity, Olivia has her own special memories of Doddie.
“He really was a force within the community,” says Olivia.
“The very first time I met him it will always stick with me as we talked about my role in the foundation and he said to me you’ve got the hard job, and I just thought this is from someone who’s facing this terminal illness.”
This year’s Doddie Aid raised more than £2 million.
For more information about Doddie Aid check out the website doddieaid.com or for more about The My Name’5 Doddie Foundation see myname5doddie.co.uk
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