My Name’5 Doddie Foundation hits £18m milestone for motor neurone disease research

The charity founded by former Scotland rugby star Doddie Weir has raised more than £18 million for research into motor neurone disease.

In 2016, at the age of 46, Weir was diagnosed with motor neurone disease (MND), a rare, progressive disease that damages the nervous system.

He died two years ago after living with the disease for almost six years.

The My Name’5 Doddie Foundation – founded by Weir in 2017 – has since supported 40 research projects examining all stages of MND in the hope of discovering effective treatments and, ultimately, a cure.

Nicola Roseman, chief executive of the My Name’5 Doddie Foundation, said: “This momentous £18 million research achievement is a testament to the thousands of campaigners and supporters who have taken up the baton from Doddie and donated to the My Name’5 Doddie Foundation .

“This is a great achievement, but we have so much more to do.”

Ms Roseman described Weir as “relentless” in his campaign for MND research.

The father of three died on November 26, 2022 and devoted the last years of his life to accelerating the search for a cure.

“Doddie was relentless in his pursuit of an MND-free world and it will be up to us to deliver on his legacy by putting more money into research projects that will make a difference for people living with MND,” Ms Roseman said.

Around 1,100 people are diagnosed with MND each year in the UK.

News of the foundation’s milestone comes ahead of the annual Doddie Aid campaign, which was launched in 2021 by former Scotland captain Rob Wainwright.

The massive event will start on January 1 and tens of thousands of people are expected to walk, run, swim and cycle to raise money to fund the search for a cure for MND.

Each of the four nations will be led by two star captains, which will be announced next month.

Ms Roseman added: “Doddie Aid is the centerpiece of our year and a time for anyone who has been directly, indirectly or simply touched by the many amazing, inspiring and heartbreaking stories from the MND community to do something about it.

“Every person who signs up makes a difference.

“We always miss Doddie, and on occasions like this anniversary we feel his absence even more.

“The best tribute we can all pay him is to do everything we can to get closer to finding a cure – and that starts with Doddie Aid 2025.”

Former GP Luke Hames Brown, 35, was forced into retirement after being diagnosed with MND last year.

He raised over £50,000 for My Name’5 Doddie by walking along Hadrian’s Wall earlier this year.

Hames Brown, who lives in Oxfordshire with his wife Kate, said: “MND can affect a person of almost any age, robbing them of their mobility, independence and life.

“It inevitably dominates and defines people’s lives, and funding and supporting research is one of the best ways to control the narrative of that definition.

“I know getting involved with Doddie Aid and supporting MND research may mean planting trees in a garden I will never see in person, but if there is any chance that my contribution can make a difference, I intend to take it.

“Even if it doesn’t happen in time for me, I don’t want other people in the future to have to go through the same experience.”