Scottish rugby player Doddie Weir launched his foundation before he died in November 22 and so far it has raised more than £18million for motor neurone disease research
Rugby hero Doddie Weir’s charity has raised more than £18 million for motor neurone disease research.
The big-hearted sportsman was diagnosed with motor neurone disease (MND) at the age of 46 in 2016. He described being “horrified at the lack of hope” given to people suffering from the rare disease but vowed to carry on smiling.
He took action by founding My Name’5 Doddie Foundation (MNDF). Doddie died in November 2022, aged 52, six years after living with the condition which stops the signals from the brain reaching the muscles. He made 61 international appearances for the Scotland national team and represented the British and Irish Lions.
Before his death he joined forces with Rob Burrow, a fellow rugby legend and MND patient to raise awareness of MND. The pair shared a bond and Rob also left a lasting £20million legacy after his death in 2024 aged 41.
Doddie was survived by his wife Kathy and sons Hamish, Angus and Ben, who are all involved in the foundation. It has so far backed 40 research projects exploring all stages of MND. The average life expectancy is just 18 months from diagnosis and there is currently no cure or effective treatment.
Nicola Roseman, chief executive of My Name’5 Doddie Foundation, said: “This momentous £18million research milestone is testament to the thousands of campaigners and supporters who have picked up the baton from Doddie and donated to My Name’5 Doddie Foundation. It is a great achievement – but we have so much more to do.”
Ms Roseman described Weir as “relentless” in his campaigning for MND research. The dad-of-three died on November 26, 2022 and dedicated the final years of his life to accelerating the search for a cure.
“Doddie was relentless in his pursuit of a world free of MND, and it will be up to us to realise his legacy by committing more money to research projects that will make a difference to those with MND,” Ms Roseman said.
About 1,100 people are diagnosed with MND every year in the UK. News of the foundation’s milestone comes ahead of the annual Doddie Aid, which was founded by former Scotland captain Rob Wainwright in 2021. The mass participation event begins on January 1, with tens of thousands of people expected to walk, run, swim and cycle to raise money to help fund the search for an MND cure.
Each of the four nations will be led by two celebrity star captains, which will be announced next month. Ms Roseman added: “Doddie Aid is the focal point of our year and the time when everybody affected directly, indirectly, or who has simply been touched by the many incredible, inspiring, and heartbreaking stories connected to the MND community can do something about it.
“Every person who signs up is making a difference. We miss Doddie always and feel his absence even more on occasions like this anniversary. The best tribute we can all pay to him is to do everything to move closer to that cure – and it starts with Doddie Aid 2025.”
Former GP Luke Hames Brown, 35, was forced to retire following his MND diagnosis last year. He raised more that £50,000 for the My Name’5 Doddie Foundation by walking the length of Hadrian’s Wall earlier this year.
Mr Hames Brown, who lives in Oxfordshire with his wife Kate, said: “MND can affect somebody at almost any age, stealing mobility function, independence, and lives. It inevitably dominates and defines people’s lives, and funding and supporting research is one of the best ways we can control the narrative of that definition.
“I know that getting involved with Doddie Aid and support for MND research might be planting trees in a garden that I never get to see personally – but if there’s any chance that my contribution can make a difference, I’m going to take it. Even if this doesn’t happen in time for me, I don’t want other people in the future to have to go through the same experience.”
