A cure for motor neurone disease (MND) could be “possible” as a charity launched by Doddie Weir unveils its five-year research strategy, a leading expert has said.
The My Name’5 Doddie Foundation (MNDF), which was set by up in 2017 by the late Scottish rugby player, outlines how the charity will invest millions of pounds into research in pursuit of treatments and a cure for the debilitating disease.
Mr Weir, who died in November following a six-year battle with MND, launched the charity in frustration at the lack of a cure and hope for those diagnosed with the condition.
But now, the strategy will be used to strengthen the charity’s short-term aim of delivering effective treatments to slow the progress of MND, while working towards the ultimate goal of finding a complete cure.
The Catalysing a Cure strategy outlines how the charity will drive forward research over the next five years with a commitment by 2028 to have invested in the development of new treatments and improving early diagnosis.
It will also improve biomarkers which indicate whether treatments are working or not.
MNDF has committed around £8.5 million to research and was also one of several UK organisations to successfully campaign for a UK Government commitment of £50 million for MND research.
Professor Ammar Al-Chalabi, director of the MND Research Centre at King’s College London, hailed the “crucial” funding.
He said: “When I started MND research almost 30 years ago it seemed ridiculous that an effective treatment might be possible.
“Now a cure is a possibility, although a treatment that dramatically slows MND is more likely. Both are still somewhat in the future.”
It follows significant advances including an improved understanding of MND biology and recent trials which demonstrated that treatment can significantly slow disease progression in some cases.
Now a cure is a possibility, although a treatment that dramatically slows MND is more likely— Professor Al-Chalabi
Professor Al-Chalabi added: “Research is expensive, however, and My Name’5 Doddie Foundation and other MND charities are crucial in funding it. They drive the cutting-edge stuff that pushes the field forward as well as the important ‘slogging away at it’ work that is essential to keep everything going. We are only where we are because of MND charities and the people who fundraise so effectively.”
Jessica Lee, director of research at MNDF, said the strategy was “ambitious”. She added: “It focuses on bringing new treatments to people living with MND, faster. It is underpinned by what matters most to our community and recognises that the people living with this devastating condition do not have time to wait.
“We believe that effective treatments to slow or stop disease progression aren’t too far away. By working closely with our remarkable research community and supporting the adoption of new approaches and ways of thinking, we will accelerate the journey towards making these treatments a reality.”
Jill Douglas, chief executive, said: “Doddie’s greatest frustration when he was diagnosed with MND in 2016 was the lack of hope for people faced with such devastating news. He wanted the Foundation to relentlessly work towards a world where that is not the case, and we are beginning to see real progress.
“There is huge momentum in MND research, and backed by the thousands of fundraisers who support the Foundation, this bold and ambitious research strategy ensures we are in the best position possible to build on that and work with the MND research community to hopefully accelerate the development of new treatments.”
