The Health Secretary has met leading academics to speed up the process of finding a cure for motor neurone disease (MND).
Steve Barclay sat down with researchers, charities and patients at a roundtable meeting on Thursday which identified how scientists, Government and charities can work together to find successful treatment for the debilitating condition.
The NHS app will also be updated on Friday to make it easier for people to use it to view and take part in MND and other health research, including studies testing new treatments using interviews and surveys.
Following the summit, the Health Secretary visited the King’s College Hospital MND Care and Research Center in Camberwell, London – the first of its kind in the country.
Among the charities taking part in the roundtable was the Name’5 Doddie Foundation, founded by former Scotland rugby player Doddie Weir, who revealed his diagnosis in 2017 and died last year.
Mr Weir recently helped raise awareness of it alongside former rugby league player Rob Burrow, who was awarded an MBE for his work on the condition.
The disease causes most sufferers to lose the ability to walk, dress, write, speak, swallow and breathe – and their lifespan is shortened.
The Government says that since it cut red tape in December 2022, £29.5 million of the £50 million pot has been channeled through specialist research centers so NHS patients can benefit from cutting-edge treatment and medicines.
Clinical trials such as one into the drug tofersen, developed by a team at the Sheffield Biomedical Research Center – are said to be promising – and the drug is believed to slow the progression of the disease in some patients.
The roundtable also discussed how a potential additional £2 million could be used to understand the underlying causes of the condition so that treatments can be developed more quickly.
Dentist and former Penzance footballer and manager Dean Mooney, 52, says his life has changed dramatically since his diagnosis and has encouraged others with the condition to take part in research.
He said: “There is a lot of talk in the media about a possible treatment for motor neurone disease.
“Let’s be real – it’s probably not going to benefit me in my lifetime, but if I can spare anyone else going through this, I’ll do whatever it takes to help get that research done. “
Mr Barclay said: “Motor neurone disease can have a devastating impact on people’s lives, and I am working with leading researchers to accelerate research and help find a cure as soon as we can.
“We are making sure that researchers get funding as quickly as possible. I encourage people in England to sign up to research through the NHS App and take part in our ever-expanding UK-wide Be Part of Research programme.”
Professor Lucy Chappell, Chief Executive of the National Institute for Health and Care Research, said: “We need to work together to ensure that quality research is funded, so that patients can make progress as quickly as possible.
“MND patients have shown us all the value of participating in research and I’m excited that we’re making it even easier for people in England to register their interest in research through the NHS App and Be Part of Research.”