Doddie Weir’s legacy as a Motor Neurone Disease campaigner

Doddie Weir helped put Motor Neurone Disease in the spotlight. The Borders rugby great was 46 when he found out he had the rare condition at the end of 2016.  

Doddie announced his diagnosis the following summer, on World MND Awareness Day, giving a flavour of how his competitive spirit on the rugby pitch would transition to his new role as a campaigner.

In August 2017, he said: “It is difficult but again it’s to me, why I’m here now. Great time in the rugby. Great family time, enjoying working. But now somebody's given me this card now to say this is your next post.”

Weir set up the My Name’5 Doddie Foundation, the five coming from the number on his Scotland playing shirt. The goals: to help fund research and try to find a cure for MND, which progressively affects the brain and nerves.

Doddie’s mission caught attention across the rugby world and far beyond. As donations poured in, the charity raised thousands of pounds, that soon turned into millions. At its heart was a big man who never seemed to leave anybody feeling small.

Doddie Weir and former teammate Rob Wainwright at a fundraising event in Edinburgh in 2018. Credit: PA Images

Paul Thompson is Director of Fundraising at My Name’5 Doddie Foundation. He said: ”Everybody knew him before this and his tartan suits and his huge personality. So any rugby player would’ve made a difference but specifically Doddie has made a huge difference.

His ability to ask for support, his ability to speak to government, to speak to celebrities, to speak to people on the street, he brings that all together.”

The former Scotland captain’s contributions were recognised at the highest level, receiving an OBE in 2019 for services to rugby, MND research and the Borders.

Even as his condition deteriorated, Doddie’s determination to affect change endured with the support of his wife and three sons.

In January 2020, at the unveiling of Doddie’s portrait at The National Galleries of Scotland in Edinburgh, he said: “We’re always thinking of new ideas to try to bring on for the awareness and try to find a cure for MND.”

Doddie was involved in campaigning that led to the Uk government pledging £50 million for MND research. Credit: ITV News

He took his fight to the Scottish parliament and was involved in campaigning that helped lead to the UK government pledging £50 million for MND research. Doctors now say they are getting closer to treatment that seemed impossible a few decades ago.

Rob Burrow is another former international rugby star who has helped raise MND awareness alongside Doddie. Together they inspired Burrow’s former teammate Kevin Sinfield to run seven ultra marathons in seven days in November 2022, passing through Melrose on his journey, to raise more than £2 million for MND charities.

Kevin Sinfield with Doddie Weir ahead of day one of the Ultra 7 in 7 Challenge from Murrayfield to Melrose. Credit: PA

And in a similar vein in February 2022, rugby stars and everyday folk cycled 500 miles from Edinburgh to Cardiff, stopping at Selkirk and Penrith on their way to delivering the match ball for Scotland v Wales. Since 2018, the tie has become known as the Doddie Weir Cup. He spoke to us then for what would be the final time.

He said: “I still find it very hard to take on what people are doing for not only myself, but everyone with MND to try and find a cure for this horrific issue.”

Doddie Weir is greeted by Scotland's Jamie Ritchie at Murrayfield ahead of his country's match against the All Blacks in November Credit: PA

Doddie Weir died on 26 November 2022, six years after his diagnosis. Just a fortnight before, there was an outpouring of affection at Murrayfield as he emerged, flanked by family and friends, before his country faced the All Blacks. 

Fitting recognition of a man who used his platform to turn a terminal diagnosis into a legacy of hope for thousands of others afflicted by this cruel disease.