Leading expert reveals cure for MND is 'possible' as new five-year research strategy is unveiled
Last updated 17th Apr 2023
A charity set-up by the late Scotland rugby legend Doddie Weir to find a cure for motor neurone disease is today (Monday) unveiling a new five-year research strategy.
It includes a commitment from the My Name'5 Doddie Foundation to have invested in the development of new treatments and improving early diagnosis by 2028.
The ‘Catalysing a Cure’ strategy also aims to improve biomarkers which indicate whether treatments are working or not.
The announcement comes as a leading expert confirms a future cure is "possible".
But Professor Ammar Al-Chalabi, director of the MND Research Centre at King's College London, admits finding a treatment that dramatically slows the impact of the muscle-wasting disease is more likely.
Slowing the disease down
Professor Al-Chalabi 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.
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."
Charity appeal funding
The My Name's Doddie Foundation 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.
It was set-up by the former Melrose, Scotland and Lions player (pictured above) in 2017 following his diagnosis. He died in November following a six-year battle with the disease.
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."
Doddie Weir's life in pictures
Doddie Weir is pictured at the BBC Sports Personality of the Year awards at The P&J arena in Aberdeen in 2019.
Doddie Weir breathes a sigh of relief as he scores a try for Scotland in a Five Nations match against Ireland in 1997.
Doddie and his wife Kathy meet the Queen, and Duke of Buccleuch, during a garden party at the Palace of Holyroodhouse in Edinburgh.
Captain Doddie Weir celebrates a victory at Newcastle Falcons.
Doddie turned out for the Barbarians in a friendly against Wales in 2002.
Doddie Weir and his family walk out with the Doddie Weir Cup ahead of the Wales v Scotland match in Cardiff in 2018.
Doddie is pictured with wife Kathy and their three sons (from left) Hamish, Ben and Angus, after receiving his OBE from the Queen at the Palace of Holyroodhouse.
Doddie dedicated the final years of his life to finding a cure for motor neurone disease.
Jill Douglas, chief executive of the My Name'5 Doddie Foundation, 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."