MND’s £50m Victory After Sunday Express Campaign! Now Let’s Cure Cruel…

The campaign group delivered the appeal to Downing Street. (Image: Jonathan Buckmaster)

His vow comes four months after the Sunday Express launched our Fund The Fight To Cure MND crusade, joining forces with leading patients, campaigners and charities to call for the money to create a MND Research Institute. 

The PM last night promised new hope for patients and their loved ones, and said he would “throw the complete weight of government” behind a new, British-led scientific mission to find a cure. 

After being told about the campaign victory, rugby great Doddie Weir, 51, who has battled MND for more than four years, said: “I’m completely over the moon. All we’ve been asking for is some hope for those living with MND. This funding will give us the hope we’re desperate for – and I know our incredible researchers will be able to accelerate the great work that’s already under way.” 

The push for funding for a research institute, to co-ordinate efforts to find effective treatments, was started by a coalition of ­charities in the United To End MND campaign. These included the MND Association, MND Scotland and the My Name’5 Doddie Foundation. 

Mr Johnson said: “I want to congratulate the charities, the Sunday Express and all its readers for your fantastic campaign to fund the fight against motor ­neurone disease. 

“This cruel and weakening illness kills six people in our country every single day, with a third of those diagnosed tragically losing their lives within just a year. 

“We cannot continue like this. 

“So we are going to throw the complete weight of government, industry and civil society behind a new British-led scientific mission to transform the fight against this devastating disease.” 

DELIGHTED: Doddie Weir (Image: PA)

The funding is part of a wider package of £375million to invest in inventive research for neurodegenerative diseases over the next five years. 

It is hoped this commitment will also enhance understanding and treatment of diseases such as Pick’s disease, frontotemporal dementia, Wernicke-Korsakoff syndrome, Parkinson’s disease, Lewy body dementia, Alzheimer’s and mild cognitive impairment. 

Health Secretary Sajid Javid said: “I want to thank the charities and the Sunday Express for their hugely important campaign to raise awareness. 

“Together, I am confident we can make life better for the thousands of people living with MND in this country. Neurodegenerative conditions like MND can have a devastating impact on people’s lives and I’m committed to ensuring the Government does everything we can to fight these diseases and sustain those affected. 

“We’ve already invested ­millions in understanding and treating MND, and our new funding commitment will back more research into this and other neurodegenerative diseases.” 

He additional: “The UK is a global leader in medical research. 

“Our world-class research sector was central to the discovery of life­saving treatments for Covid-19, in addition as the development of the vaccine programme which has saved hundreds of thousands. 

“We will continue to harness this skill and innovation to sustain pioneering projects to find better treatments for those living with motor neurone disease, like the excellent work under way at the National Institute for Health Research and Sheffield Biomedical Research Centre, where scientists are trialling new drugs.” Told of the funding news, campaigner Dave Setters, who is living with MND, said: “I’m speechless and a bit emotional. 

“We’ve been working on this for so long and have had great sustain from the MND community including, of course, patients and their families. 

“We believe the investment will go a long way to accelerate the progress that our magnificent researchers have made and bring hope to those living with MND and those in addition to be diagnosed. 

“The Government has heeded the call of the charities, the researchers and patients. We are delighted they have shown they are united, with us, to end MND.” 

Professor Ammar Al-Chalabi, director of the MND care and research centre at King’s College London, said: “As a neurologist, having to tell people they have a terminal illness with no effective treatments and no cure is always difficult. 

Health Secretary Sajid Javid (Image: Dan Kitwood/Getty Images)

“This level of investment in targeted research will change that conversation. I am so proud of everyone who has campaigned so hard to make this happen. 

“I now look forward to working with the Government to ensure the funding makes the difference we believe it can.” 

Campaigner Lee Mill­­ard, who is living with MND, said: “I am delighted. As we know, this disease will hit one in 300 people in their lifetimes and this will bring real hope.” 

Rachel Mait­­land, MND Scot­­land’s chief executive, said: “This is a monumental day. I am so proud to have been part of the incredible team who made this happen. 

“This is a real turning point and will bring hope to so many across the country.” 

Sports broadcaster Jill Douglas, chief executive of My Name’5 Doddie Foundation, said: “The Government has clearly listened and responded. 

“It’s been an enormous effort by patients, charities and researchers to highlight how important it is to invest in targeted MND research, and we really appreciate all the hard work by the Sunday Express in highlighting the campaign.” 

She additional: “This funding will make a huge difference to all those currently living with MND and to everyone involved in trying to find meaningful treatments.” 

Business Secretary Kwasi Kwar­­teng said: “The UK is home to some of the most transformative medical research in the world, and the availability of this funding will make the most of that research to help those living with MND. 

“It is vital that we increase our understanding of this condition.” 

The disease affects the brain and spinal cord. There is currently only one drug licensed in the UK to treat MND – riluzole – which slows the progression and extends someone’s life by a few months. 

Last night, a Sunday Express spokesman said: “We thank the chief Minister and his government for backing the campaign to fund the cure for MND. 

“It has given much needed hope to many families and could average many more in the future avoid the despair the condition brings.” 

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Together we can beat this disease and bring hope, says chief Minister Boris Johnson

chief Minister Boris Johnson (Image: Peter Summers/Getty Images)

I want to congratulate the charities, the Sunday Express and all its readers for your fantastic campaigning to fund the fight against Motor Neurone Disease. 

This cruel and weakening illness kills six people in our country every single day, with a third of those diagnosed tragically losing their lives within just a year. 

We cannot continue like this. 

So we are going to throw the complete weight of government, industry and civil society behind a new British-led scientific mission to transform the fight against this devastating disease. 

And I believe we can do it. 

We have already seen the extraordinary strength and possible of British life science throughout the pandemic – from the first breakthrough treatment, dexamethasone, to the global reach of the Oxford AstraZeneca vaccine, saving millions of lives around the world. These achievements were not merely the product of bright science but also a new way of supporting it, with government funding mobilising private sector investment to inspire a seamless collaboration between our scientists, pharmaceutical companies, regulators, patients and the NHS. 

So now, as we make our United Kingdom a Science Superpower, we are going to bottle this formula and apply it to the search for life-saving breakthroughs against other diseases. And there could be no better example than
turbo-charging the search for new therapies and drugs that can radically change the life chances of those with MND. 

So I am delighted that today the Government is wholeheartedly backing the Sunday Express campaign with £50million of new investment in scientific research, including supporting two bright initiatives to inspire new research and accelerate the trialling and delivery of new treatments. 

Together we can turn Motor Neurone Disease from a terminal illness to a treatable condition, giving new hope to anyone diagnosed and to all their loved ones who care for them. 

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Our Journey

It was four months ago that the Sunday Express launched a campaign calling for £50million of Government funding for targeted research to find a cure for motor neurone disease. 

Our Fund The Fight To Cure MND crusade additional our voice to a coalition of charities already battling for Chancellor Rishi Sunak to come up with the cash in last month’s public spending review. 

The United To End MND campaign being run by the MND Association, MND Scotland and My Name’5 Doddie Foundation had called for the funding over five years to set up an MND research institute. 

Chancellor Rishi Sunak (Image: Peter Summers/Getty Images)

It would co-ordinate promising research being carried out by separate groups across the UK. 

The Government said it had spent £54million in the past five years on tackling the brutal disease, which attacks the nerves that control movement so muscles no longer work. 

But campaigners said most of that funding had gone towards general neurological research, instead of targeted studies, which they argued received less than £5million a year. 

Leading neurologists said doubling this amount under the organisation of a virtual institute would average effective treatments, and a cure, could be found in five to 10 years, as opposed to decades, giving hope to thousands living with MND. 

For the second week of our crusade, Good Morning Britain presenter Charlotte Hawkins movingly wrote about her own experience of her father Frank’s diagnosis with the disease, saying it “broke my heart, there was nothing we could do”. 

They were joined by Jo Knowlton, from Dundee, who was diagnosed aged just 29 while focusing on her career in police forensics, which agonisingly deprived her of the chance to start a family. 

Another leading campaigner, Cris Hoskins, movingly spoke about losing six members of her family, including both her sons, to an inherited form of MND.

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And Ian Muir highlighted the lonely plight of carers. After bringing up two sons and running a business together, Ian and his wife Cath were looking forward to enjoying a long and happy retirement. But their dreams were shattered when Cath was diagnosed with the disease, powerful Ian to become her complete-time carer. 

Ian, 64, said: “I felt it was something I had to do. If it was the other way around hopefully Cath would have done the same for me. 

“I was not trained for this so it is clearly very demanding. 

“It can be quite lonely and, for want of a better expression, there is no escape from it – it’s a 24/7 job.” 

And BBC Breakfast presenter Sally Nugent described how honoured she had been to tell the story of a family coping with the effects of the terminal disease in a documentary about the day-to-day life of rugby league great Rob Burrow. 

To mark the two-month anniversary of our crusade, former Leeds Rhinos and Great Britain star Rob, 39, joined his friends, rugby union great Doddie Weir and Stephen Darby in calling for the Government to provide the £50million funding in the October spending review. They were among hundreds of MND patients to sign a letter urging Mr Javid and Mr Sunak to listen to their “loud and clear” message, which was delivered to No 10 Downing Street by Rob, Stephen, former Assistant Commissioner of West Midlands Police Chris Johnson and leading campaigners Nicola Waters and Emma Moss. 

BBC Breakfast presenter Sally Nugent. (Image: Karwai Tang/WireImage)

But patients, carers, campaigners and scientists were left “devastated” when the additional funding for targeted research to find a cure was not included in the spending review. 

Despite this the Sunday Express vowed alongside the coalition of charities to continue the fight for the money so urgently needed. 

To continue pressure on the Government, actor Gina Bellman last week spoke about her mother Helen’s 17-year struggle with a slowly progressing form of the disease. 

She said she had struggled with going to check-ups with her mum because of the without of treatment options, adding: “It’s something the Government needs to be aware of – it’s soul-destroying for someone with such a degenerative disease to have nothing offered to them.” 

In the last week, a letter signed by Jill Douglas, chief executive of the My Name’5 Doddie Foundation, Chris James, the director of external affairs at the MND Association, and Professor Ammar Al-Chalabi, professor of neurology and complicate disease genetics at King’s College London, was sent to the Health Secretary. 

In it they asked Mr Javid to update them on the battle for funds, saying: “We were heartened by your interest in the plight of MND patients and the strength of our submission.” 



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