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The minister met leading campaigners and researchers on Thursday to discuss progress in delivering £50million of government funding secured by a Sunday Express campaign. Former Prime Minister Boris Johnson pledged this money in November 2021 after we teamed up with the United to End MND coalition of charities, scientists and patients including former rugby stars Doddie Weir and Rob Burrow.
Hope soon turned into frustration at red tape, however, with researchers delayed from accessing the cash.
But £29.5million of the promised money is now being allocated.
After touring the world-leading MND research centre at London’s King College Hospital, Mr Barclay said: “Motor Neurone Disease can have a devastating impact on people’s lives.
“Thanks to the Sunday Express for your important campaign shining a spotlight on this issue.
“I’m determined to help accelerate research to find a cure and boost research into promising treatments.
“I met leading researchers to discuss how we can do this and want to continue to work closely with the sector to find a cure for this cruel condition.”
Mr Barclay added: “Since we cut red tape to speed up £50million of government-backed funding, we’ve made sure this vital funding gets to researchers faster.
“This has ensured quicker progress towards treatments. We are also seeing promising developments, such as with NIHR’s Sheffield Biomedical Research Centre research into the drug Tofersen.
“Findings suggest it may slow progression of the disease for some sufferers but I know there is still more to do.”
Calling on the public to sign up for research projects via the NHS app, the minister then praised rugby league great Kevin Sinfield for raising more than £2million. He ran seven ultra-marathons in seven days last November in honour of his close friend Rob Burrow, who is living with MND.
Mr Barclay said: “I’m grateful to the United to End MND campaign and to Kevin Sinfield on his epic achievement, as well as remembering the late Doddie Weir for his outstanding contribution over the past five years. We will find a cure for this disease – and we’re doing everything we can to make it happen.”
In a statement, the United to End MND coalition said: “We are grateful for the MND funding from government and for the fact £29.5million of the promised £50million is now being
allocated but we continue to highlight our desire to avoid funding via multiple disjointed pots of money.
“Steve Barclay has the opportunity to oversee a huge step-change in Motor Neurone Disease research.
“We urge him to lead the charge in further collaborating with the MND community to achieve what we all have as our vision – a cure for MND.”
