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Charity set up by Doddie Weir invests £4m in bid to accelerate MND research
@Source: independent.co.uk
A charity set up by late rugby legend Doddie Weir has committed £4 million to an “open science framework” for research into motor neurone disease.
My Name’5 Doddie Foundation has made its biggest-ever single investment in research to fund four projects, which are described as “highly collaborative” and aim to ensure findings are shared rapidly and openly among researchers worldwide.
The investment, known as the Discovery Network, gives £1 million grants to four multi-institutional teams of researchers, at 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, and two additional projects are expected to join the Discovery Network next year, with applications for funding now open.
MND affects around 5,000 people in the UK at any given time, and there is no effective treatment or cure.
The Discovery Network will focus on identifying potential treatment targets and disease mechanisms, and by removing competitive barriers between research teams, the model aims to accelerate breakthroughs that could ultimately lead to effective treatments.
It was 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.
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.”
Dr Martina Hallegger, who leads 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, the year after Weir was diagnosed with MND, the My Name’5 Doddie Foundation has committed almost £20 million to research. Weir died of the condition aged 52 in 2022.
It is preparing to mark two years since the launch of its research strategy Catalysing a Cure, which aims to transform the landscape of MND research.
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.
Paul Thompson, director of fundraising at My Name’5 Doddie Foundation, said: “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 £20 million 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.uk/research/funding-opportunities/.
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