- Charity founded by late rugby legend and MND campaigner Doddie Weir makes biggest single investment in pioneering MND research
- Foundation’s Discovery Network will drive pioneering ‘open science’ model – which has proved effective in approaches to Parkinson’s Disease and Bipolar Disorder
- £1 million grants awarded to four UK university-led projects seeking to identify early signs of MND
- Case study: Mum-of-four who ignored a call from Doddie Weir OBE after her motor neuron disease (MND) diagnosis as she didn’t recognise his number has praised the work of the new Discovery Network for ‘shaking things up’ in the MND research space
The Foundation set up by the late Scotland rugby legend and motor neuron disease (MND) campaigner Doddie Weir OBE has announced details of its largest-ever single investment in research – more than £4 million – to fund four cutting-edge projects as part of its pioneering Discovery Network.
This landmark commitment marks a ‘step change’ in the search for effective treatments for MND, which affects around 5,000 people in the UK at any given time, and for which there is no effective treatment. Inspired by the Michael J. Fox Foundation’s success in accelerating Parkinson’s research through the ASAP initiative, and similar approaches in bipolar disorder with BD2, My Name’5 Doddie Foundation is the first to apply this highly collaborative ‘open science’ model to MND in the UK, ensuring findings are shared rapidly and openly among researchers worldwide.
The Discovery Network will focus on identifying potential treatment targets and disease mechanisms. By removing competitive barriers between research teams, the model aims to accelerate breakthroughs that could ultimately lead to effective treatments.
The Foundation’s record-breaking investment includes £1m grants for four multi-institutional teams of researchers, led by the University of Oxford, King’s College London, University College London, and the University of Edinburgh. Each project underwent a rigorous selection process to ensure funding is channelled into the most promising and ambitious research, with the best teams for the development of the Network. Two additional projects are expected to join the Discovery Network next year, with applications for funding now open.
Dr Martina Hallegger, leading the University of Oxford project, said: “The Discovery Network funding is a game-changer for MND research, enabling us to strengthen collaborations and establish new ones within an open science framework.
“By working closely with teams across the UK and internationally, we can align methodologies, share expertise, and accelerate progress in understanding this devastating disease. This commitment to collaboration ensures that discoveries are more accessible, comparable, and impactful for the entire MND research community.”
Since its launch in 2017, My Name’5 Doddie Foundation has committed almost £20m to MND research. The Foundation is preparing to mark the two years since the launch of its bold research strategy, Catalysing a Cure, which aims to transform the landscape of MND research, shifting focus towards bold, high-impact projects with the greatest potential to develop life-changing treatments. The five-year blueprint set out how millions of pounds will continue to be invested into innovative research to find effective treatments and ultimately a cure for a disease people have a one in 300 lifetime risk of developing.
Dr Anna Motyl, Research Programme Manager at My Name’5 Doddie Foundation, who is leading the Discovery Network, said: “This network is about thinking differently and acting faster. By making research findings openly available and providing substantial funding to teams spanning multiple institutions and fields of expertise, we’re helping scientists build on each other’s work rather than duplicating efforts.
“We’ve seen this approach drive breakthroughs in conditions such as Parkinson’s and bipolar disorder – now, it’s time to bring that momentum to MND.
“When Doddie established the Foundation in 2017, he wanted to make a step change and fund the smartest, most efficient research to speed up the development of new treatments. Research takes a long time, but by investing in innovative projects and new funding models, we want to make faster progress and bring effective treatment options to people living with MND as quickly as possible.”
Doddie Weir OBE, a Scottish rugby icon, was diagnosed with MND in 2016 and dedicated his final years to raising awareness and funding for research. His relentless drive and infectious optimism inspired a movement that continues to push the boundaries of what is possible in MND research.
Paul Thompson, Director of Fundraising at My Name’5 Doddie Foundation, added: “Doddie put MND in the spotlight like never before. Thanks to the unwavering support of our fundraisers, we’re making sure that light burns brighter than ever. It’s up to all of us to make that count.
“We’re investing in research that has the potential to bring real, tangible progress. Committing almost £20m to research in such a short space helps that cause massively, and that’s what Catalysing a Cure means. Everybody who donates and supports the Foundation is playing their part in helping to realise Doddie’s legacy – a world free of MND.”
For more information on the Discovery Network and current funding opportunities, visit: https://www.myname5doddie.co.
CASE STUDY:
Mum living with MND joins Discovery Network to help ‘shake-up’ research into the disease
A MUM-OF-FOUR who ignored a call from Doddie Weir OBE after her motor neuron disease (MND) diagnosis as she didn’t recognise his number, has praised the work of the new Discovery Network for ‘shaking things up’ in the MND research space.
Diagnosed in 2021, Dr Jennie Starkey had never heard of Scottish rugby legend Doddie Weir or his Foundation. A friend, moved by her diagnosis, reached out to the charity, prompting Weir himself to call her. Assuming it was a nuisance call, she ignored it – only later realising she had missed a personal message from one of MND’s most vocal campaigners.
Now, in a full-circle moment, the academic has joined the Discovery Network Advisory Board as a patient representative, helping to shape research funding decisions and bridge the gap between researchers and those living with MND.
Completing her PhD earlier this year after initially pausing it post-diagnosis, Dr Starkey is determined to make a difference. She believes the Foundation is ‘shaking things up’ in MND research, just as Weir did when he asked why, after decades, no cure had been found.
She said: “This is like planting trees I’ll never pick fruit from, but if it helps the community, then I’ve done a good job.
“The Foundation doesn’t take no for an answer. It helps us find positives by focusing on research and being honest with patients, cutting through the white noise.”
Dr Starkey’s journey with MND began during lockdown when she noticed her speech was slurred while recording online lectures. Her story is a testament to the power of community, research, and resilience – values at the heart of My Name’5 Doddie Foundation’s mission to drive progress towards a cure.
