by A cure for motor neuron disease (MND) may 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 up in 2017 by the late Scottish rugby player, outlines how the charity will invest millions of pounds in research seeking 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 bolster the charity’s near-term aim of providing effective treatments to slow the progress of MND, while also working towards the ultimate goal of finding a comprehensive cure.
The Catalysis a Cure strategy outlines how the charity will drive research forward over the next five years with a commitment to invest by 2028 in developing new treatments and improving early diagnosis.
It will also improve the biomarkers that indicate whether or not treatments are working.
MNDF has committed around £8.5 million to research and was also one of several UK organizations to successfully campaign for a UK Government pledge of £50 million to MND research.
Professor Ammar Al-Chalabi, director of the MND Research Center at King’s College London, hailed the funding as “crucial”.
He said: “When I started researching MND almost 30 years ago, it seemed ludicrous that an effective treatment could be possible.
“Now a cure is a possibility, although a treatment that drastically slows MND is more likely. Both are still somewhat in the future.
It follows significant advances including a better understanding of the biology of MND and recent studies showing that 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. They drive the cutting-edge stuff that pushes the field forward as well as the important “work away” work that is essential to keep everything going. We are where we are only because of the MND charities and people who raise funds so effectively.
Jessica Lee, director of research at MNDF, said the strategy was “ambitious”. She added: “It is focused on bringing new treatments to people living with MND, faster. It is championed by what matters most to our community and recognizes that people living with this devastating condition don’t have time to wait.
“We believe effective treatments to slow or halt the progression of the disease are not too far off. By working closely with our amazing research community and advocating for new approaches and ways of thinking, we will accelerate the journey towards realizing these treatments.
Jill Douglas, chief executive, said: “Doddie’s biggest frustration when diagnosed with MND in 2016 was the lack of hope for people faced with such devastating news. He wanted the Foundation to work relentlessly toward a world where that wasn’t the case, and we’re starting to see real progress.
“There is tremendous momentum in MND research and, bolstered by the thousands of fundraisers supporting the Foundation, this bold and ambitious research strategy ensures that we are in the best possible position to build on this and work with the MND research community. to hopefully accelerate the development of new treatments.”
