A cure for motor neurone disease is now a “possibility” thanks to a charity launched by the late Scottish rugby star Doddie Weir, an expert has revealed. The My Name’5 Doddie Foundation will invest millions of pounds into research in pursuit of treatments and a cure for the debilitating disease.
Doddie, who died in November aged 52 following a six-year battle with MND, launched the charity in 2017 after getting frustrated at the lack of hope for those diagnosed with the condition.
The Catalysing A Cure strategy outlines how the charity will drive forward research over the next five years, with a commitment to investing in the development of new treatments by 2028.
The foundation has committed around £8.5million to research. It was one of several organisations to campaign successfully for a Government commitment of £50million for MND research.
Professor Ammar Al-Chalabi, director of the MND Research Centre at King’s College London, called the funding “crucial”.
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.
“Research is expensive, however, and the 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.”
There have been significant recent advances in the field, including an improved understanding of MND biology.
Trials have demonstrated that certain treatments can significantly slow disease progression in some cases.
Jessica Lee, director of research at the My Name’5 Doddie Foundation, 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 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.”
TV sports presenter Jill Douglas, the charity’s chief executive, said: “We are beginning to see real progress.
“There is huge momentum in MND research and this bold and ambitious strategy ensures we are in the best position possible to build on that and work with the research community to accelerate the development of new treatments.”