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), 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 after battling MND for six years, launched the charity in frustration at the lack of a cure and hope for those diagnosed with the condition.
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 Catalysis 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.
MNDF has committed around £8.5million to research and was also one of several UK organisations to successfully campaign for a UK Government commitment of £50million for MND research.
Professor Ammar Al-Chalabi, director of the MND Research Centre at King’s College London, hailed the ‘crucial’ funding.
‘When I started MND research almost 30 years ago it seemed ridiculous that an effective treatment might be possible,’ said Professor Al-Chalabi.
‘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 that demonstrated treatment can significantly slow disease progression in some cases.
Professor Al-Chalabi added: ‘Research is expensive, however, and My Name’5 Doddie Foundation and other MND charities are crucial in funding it.’
Jessica Lee, director of research at MNDF, called the strategy ‘ambitious’.
‘It focuses on bringing new treatments to people living with MND, faster,’ she said. ‘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.’
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