Charity set up by Newcastle Falcons rugby legend Doddie Weir reaches £18 million milestone for MND research

A charity founded by the late Scotland and Newcastle Falcons rugby legend Doddie Weir has raised more than £18 million for motor neurone disease research.

Weir was diagnosed with motor neurone disease (MND) – a rare, progressive condition that damages the nervous system – at the age of 46 in 2016. He died two years ago after living with the disease for almost six years.

My Name’5 Doddie Foundation – set up by Weir in 2017 – has since backed 40 research projects exploring all stages of MND in the hopes of discovering effective treatments and eventually a cure.

Nicola Roseman, chief executive of My Name’5 Doddie Foundation, said: "This momentous £18 million 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 for the disease, which around 1,100 people in the UK are diagnosed with each year.

"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.

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."

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