Health and Social Care Secretary meets leading mnd researchers to accelerate search for cure 

• On the back of accelerating access to £50 million for motor neurone disease (MND) research, Health and Social Care Secretary hosts roundtable with researchers, charities and patients to speed up progress in developing treatments
• The roundtable identified how leading researchers, scientists and the government can work better together to fast-track finding a cure
• Everyone in England can now sign up to research into MND and other conditions via the NHS App.

People with motor neurone disease (MND) are set to benefit from improved collaboration between the government, researchers and charities, on top of accelerated access to funding, to speed up progress into developing treatments and finding a cure.  

Today (Thursday 2 January), the Health and Social Care Secretary Steve Barclay met with leading representatives from across the MND research community, including medical research charity LifeArc’s Dr Catriona Crombie, MND charities Name'5 Doddie Foundation, MND Association, and MND Scotland, and patients, to discuss ways to fast-track research into the disease and look at how the government and sector can work better together to benefit patients. 

MND continues to have a devastating impact on the lives of people living with the condition and their families. The roundtable set out how the government will continue to work closely with the research sector, cut red tape to make accessing funding easier and boost research into new treatments. 

Following the roundtable, the Health and Social Care Secretary visited the King’s College Hospital MND Care and Research Centre - which was the first in the country and is now one of 22 research centres - to meet staff, patients and charities to see first-hand how government funding for MND research has benefitted them. King’s research labs helped find the only current treatment that targets the underlying causes of neurological diseases such as MND, and is aiming to find a cure and improve quality of life for patients and their families. 

The NHS App will also be updated today to make it easier for people to take part in MND and wider health research. People will be able to visit Be Part of Research through the app to view and sign up to research.

Health and Social Care Secretary Steve Barclay said:

“Motor neurone disease can have a devastating impact on people’s lives, and I’m working with leading researchers to accelerate research and help find a cure as soon as we can.

“We have made strong progress since we pledged £50 million for MND research with new treatments being developed and promising results from clinical trials reported, but I know there is still more to do. Yesterday, I held a roundtable with experts, charities and patients to discuss how we can encourage and invest in the best research to drive more results.

“By cutting red tape and building on existing investments, we are making sure funding gets to researchers as quickly as possible. I encourage people in England to sign up to research via the NHS App and join our ever-growing UK-wide register Be Part of Research.”

There are many different types of research users of the NHS App can sign up to, including studies that test new treatments via interviews or surveys. A study might take place in a hospital, GP practice, or other health and social care locations in the community but some studies can also be done at home, online or by telephone. 

For example, dentist and former football manager Dean Mooney, whose life has changed dramatically since his Amyotrophic Lateral Sclerosis (ALS) diagnosis, has appealed to others who have the disease to join him in a new brain imaging study to help the race to find new treatments. Dean has worked with the University of Exeter’s world-leading Neurodegeneration Imaging Group, led by Professor Marios Politis, that is appealing for people who have MND to get in touch, and take part in a year-long study.

Since the government cut red tape in December to speed up £50 million into MND research across the UK, immediate investment of £29.5 million was injected through specialist research centres so NHS patients could benefit from cutting-edge treatment and medicines. There are more clinical trials than ever before, delivering promising developments - such as research from NIHR’s Sheffield Biomedical Research Centre into the drug Tofersen, with findings suggesting it may slow progression of the disease for some people living with MND. 

There have also been applications proposing a collaboration between researchers to establish a clinical trial in new medicines and building infrastructure to support MND research activity in laboratories. In addition, discussions are underway with the sector to develop a proposal for an additional £2 million to focus on analysing existing data on the condition to explore the underlying causes of MND and help develop breakthrough new treatments as part of the MND Collaborative Partnership involving patients, researchers, charities LifeArc, My Name'5 Doddie Foundation, MND Association and MND Scotland and government bodies MRC and NIHR, and £6 million to help move laboratory discoveries into clinical trials.

This means patients will have access to medicine trials faster and will receive the care they need as soon after treatment is discovered. These initiatives were discussed at the roundtable so that action can be taken immediately to prepare and agree the proposals so patients can benefit from world leading multidisciplinary research. 

CEO of the NIHR Professor Lucy Chappell said: 

“We are working hard to accelerate progress in motor neurone disease research. The charities and campaigners have done so much to focus attention and government is committed to delivering resources. This roundtable is a great opportunity to bring patient groups, world-leading experts, and government research funders together. We need to work together to ensure that high quality research is funded, so breakthroughs can reach patients as quickly as possible. 

“MND patients have shown the value to us all of taking part in research and I am excited that we are now making it even easier for people in England to register their interest in research via the NHS App and Be Part of Research.” 

The remainder of the £50 million MND funding is available for researchers to access via the National Institute for Health and Care Research (NIHR) and Medical Research Council (MRC) who are working together to ensure proposals are referred to the most appropriate scheme for consideration at the early idea stage.

Further case study details:

Former football manager with Motor Neurone Disease appeals for others to take part in research

A dentist and former football manager whose life has changed dramatically since his ALS diagnosis has appealed to others who have the disease to join him in a new brain imaging study to help the race to find new treatments.

The University of Exeter’s world-leading Neurodegeneration Imaging Group, led by Professor Marios Politis, is appealing for people who have ALS (also known as Motor Neurone Disease) to get in touch, and take part in a year-long study.

ALS, or Amyotrophic Lateral Sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. The disease causes damage to the nerves that lead from the brain throughout the body, known as motor neurones. As these motor neurones deteriorate, a person’s ability to move voluntarily is diminished, impacting movement and speech. Early symptoms include muscle weakness, and the disease almost always progresses. Most people with ALS eventually lose the ability to walk, dress, write, speak, swallow, and breathe, and their life span is shortened.

For former Penzance football player and manager Dean Mooney, 52, the first symptoms of the condition were a stiffness in his left hand, and a mild tremor in his arm. The father-of-four is originally from Ireland, but moved to the UK aged 16, starting at dental school two years early because of his academic ability and has lived in Penzance for over 20 years. He said: “When I first noticed symptoms, I really wasn’t worried. It was an irritation in my work as a dentist, and in my sailing activities. I thought it was simply too much caffeine, or dehydration – something like that.”

But, as lockdown came and went in 2020, Dean’s condition worsened, and a neurologist diagnosed him with ALS in August. “I went outside and sat in the car and started Googling, which is the worst thing you can do. The only reference point I could think of was Stephen Hawking.”

Over the following months, Dean told his wife and children, now aged between 16 and 22, as well as the wider community. “It was a terrible time. I went through something close to the seven stages of grief. I researched going to the euthanasia clinics in Switzerland, and each new person’s reactions often made me confront it all afresh. Since those early days I’ve tried to be very matter-of-fact about it, though, and my family has taken the same approach. I smile, so they do.

“It took me six months before I realised that the disease wasn’t progressing as fast as I feared it might. I’m still here, and I have to make the most of it. I used to be very fit – I ran the Dublin marathon in 2017, and I was still running at Christmas 2021, although I was exhausted afterwards. Now sometimes I can still go out on the sailing boat, but I'm now simply a passenger rather than an active participant.  

“Daily life has become a series of compromises. I can’t eat what I want, wear what I want, or do what I want. It’s frustrating not being able to plan. Should we go on holiday while I still can, or should we be modifying the house? We have no idea what I’ll be able to do in six months’ time. But despite all that, I know things could be a lot worse.”

Dean readily signed up to the Exeter research. He said: “There’s a lot of talk in the media about a potential treatment for Motor Neurone Disease. Let’s be real – it probably won’t benefit me in my lifetime, but if I can spare anyone else having to go through this, I’ll do whatever it takes to help get that research over the line.”