Charity founded by Doddie Weir passes £11m milestone for MND research

The foundation set up by late rugby star Doddie Weir has vowed the relentless pursuit of a world free of MND will be his legacy one year on from his death.

My Name’5 Doddie Foundation (MNDF) has now committed more than £11 million to 40 research projects to help find effective treatments and, one day, a cure for the disease.

The charity, set up by Weir following his diagnosis in 2016, launched a five-year research strategy, Catalysing a Cure, in April this year.

It set out how millions of pounds will be invested into innovative research to find treatments and ultimately a cure for MND, which affects around 5,000 people in the UK at any one time.

Former Scotland player Doddie Weir before kick-off of at a game in Edinburgh (PA)PA Archive/PA Images - Jane Barlow

The work includes the commitment of up to £500,000, announced for a new project at University College London (UCL) and the Francis Crick Institute aimed at helping understand the impact of DNA damage in the development and progression of MND.

It is hoped the research – led by Professor Rickie Patani – could one day lead to new targets for drugs that treat MND.

The announcement follows other major commitments made to projects including up to £250,000 to a King’s College London study, led by Dr Andrea Perera, aiming to develop a new gene therapy for MND and optimise a new technique to deliver it to the motor neurons.

It also includes £50,000 seed funding for more UCL research attempting to unravel the biomarker and therapeutic potential of a well-known protein in MND.

If successful, it could help improve the way new treatments are tested in the future.

One year on from Doddie’s death, his presence is as large as ever as a symbol of hope and unity in our relentless drive towards a world free of MND

Jill Douglas, foundation chief executive

Jill Douglas, chief executive at My Name’5 Doddie Foundation, said: “One year on from Doddie’s death, his presence is as large as ever as a symbol of hope and unity in our relentless drive towards a world free of MND.

“There continues to be huge momentum in MND research, and backed by the thousands of fundraisers who support the foundation, we will continue to work towards the development of new treatments.

“The £11 million the foundation has now committed to that research will have a huge impact on the MND community’s continued efforts, but we know it will take so much more to achieve our goal. That’s where our true commitment remains.”

Jessica Lee, director of research at the foundation, said: “We are committed to funding research that will accelerate the development of new treatments for MND; a devastating condition which currently has no effective options.

“The exciting and potentially ground-breaking nature of these projects is reflected in the significant investment we are making. When we launched our new research strategy, Catalysing a Cure, these kinds of projects, with the potential to open up new therapeutic avenues, were exactly what we had in mind.

“This, of course, is just the beginning, and we will continue to invest in new research in hope of making further breakthroughs in the search for effective treatments for MND, and ensure all funds donated to the foundation have the greatest impact possible.”

Doddie dedicated so much time to raising awareness of MND and the urgency needed to put more money into research to help find effective treatments and move closer to one day identifying a cure

Kathy Weir

Doddie’s wife Kathy, who continues to champion Doddie’s campaign alongside their sons Hamish, Angus and Ben, said: “Doddie dedicated so much time to raising awareness of MND and the urgency needed to put more money into research to help find effective treatments and move closer to one day identifying a cure.

“He knew it was unlikely to be for him, but he wanted to bring that hope closer for everybody living with MND and those who are diagnosed in the future.

“A figure like £11 million seemed like a dream when he started. The impact that money will have on so many research projects and the fight against MND is incredible.”

The foundation has this year raised millions to be committed to research, including more than £700,000 through Kenny Logan’s high-profile 700-mile celebrity endurance Rugby World Cup Challenge, £88,000 from a team of Doddie’s former 1988 Scottish Schoolboys teammates, and a record £2 million from the annual Doddie Aid mass participation campaign.

The 2024 Doddie Aid event also launches next month, with thousands of people from across the UK and Ireland expected to join in and raise more money to help fund research.

Doddie Aid is a virtual mass-participation exercise event, founded by Doddie’s friend and former Scotland captain Rob Wainwright, that lasts for five weeks from January 1 2024.

Over the last three years the event has seen more than 60,000 participants cover eight million miles and raise more than £4 million for the foundation.