My Name’5 Doddie Foundation reaches £18m milestone for motor neuron disease research

A charity founded by former Scottish rugby star Doddie Weir has raised more than £18 million for research into motor neurone diseases.

Weir was diagnosed with motor neuron disease (MND) – a rare, progressive illness 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.

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

Nicola Roseman, chief executive of the My Name’5 Doddie Foundation, said: “This milestone in the search for £18 million is testament to the thousands of campaigners and supporters who have taken up Doddie’s baton and donated to the My Name’5 Doddie Foundation.

“This is a great achievement, but we still have a long way to go. »

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

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

“Doddie has been tireless in his quest for a world without MND, and it will be up to us to realize his legacy by committing more money to research projects that will make a difference to people with MND,” said Mrs. Roseman.

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, 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 a cure for MND.

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

Ms Roseman added: “Doddie Aid is the focal point of our year and the time when everyone affected directly, indirectly, or who has simply been touched by the many incredible, inspiring and heartbreaking stories linked to the MND community, can do something about it. .

“Every person who registers makes a difference.

“We still miss Doddie and feel his absence even more on occasions like this birthday.

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

Former GP Luke Hames Brown, 35, was forced to retire following his diagnosis with MND last year.

He raised more than £50,000 for the My Name’5 Doddie Foundation by walking Hadrian’s Wall earlier this year.

Mr Hames Brown, who lives in Oxfordshire with his wife Kate, said: “MND can affect someone at almost any age, robbing them of mobility function, 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 that getting involved with Doddie Aid and supporting MND research could be like planting trees in a garden that I have never been able to see personally – but if there is a chance my contribution could make a difference, I will seize it.

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