Tag: MND research

UK Government delivers on pledge for £50 million MND research funding

Red tape will be cut to speed up research into Motor Neurone Disease (MND) across the UK, enabling faster progress towards treatments

  • The full £50 million pledged for MND research is being placed into the hands of researchers as quickly as possible with further awards made today.
  • £29.5 million of government funding to be invested immediately through specialist research centres and partnerships with leading researchers.
  • A further £20.5m to accelerate work on the most promising treatments has also been committed for use in MND research, available through open call processes.

The UK Government will cut red tape in order to speed up research into Motor Neurone Disease (MND) across the UK, with immediate investment so NHS patients can benefit from cutting edge treatment and medicines, the Health and Social Care Secretary, Steve Barclay, and Business Secretary, Grant Shapps, have announced today.

Work being done in the field of MND research has highlighted the impact that cutting-edge research can have, but also on the progress still to be made to help sufferers of this debilitating condition.

Removing red tape will ensure funding reaches frontline researchers more quickly, enabling faster progress towards treatments. This will be done through Biomedical Research Centres – which are collaborations between academics and clinicians to translate breakthroughs in the lab into potential new treatments, diagnostics and medical technologies – to get funding to the most promising researchers who are already working in MND.

As well as this, the National Institute for Health and Care Research (NIHR) and Medical Research Council (MRC) will work together to ensure proposals are referred to the most appropriate scheme for consideration at the early idea stage.

This presents an opportunity for outstanding researchers to get further funding beyond the initial £50 million to get new treatments from the lab to patients.

The Health and Social Care Secretary will also host leading researchers and patient groups at a roundtable to discuss their research on MND and how they can access this additional funding and ensure bids are made – this will ensure an open dialogue of communication.

Health and Social Care Secretary Steve Barclay said: “Motor neurone disease can have a devastating impact on people’s lives, and I’m determined to help accelerate research to find a cure and develop innovative treatments.

“We’ve already invested millions to improve treatments and our understanding of this condition but there’s more we can do and that’s why I’m now slashing red tape to fast-track funding and ensure it reaches frontline researchers more quickly.

“I’m grateful to the United to End MND campaign, for their work raising awareness and I warmly congratulate Kevin Sinfield on his epic achievement completing seven ultra-marathons, as well as remembering the late Doddie Weir for his outstanding contribution over the past five years.”

Secretary of State for Business, Energy & Industrial Strategy Grant Shapps said: “Some of the UK’s brightest and best scientific minds are battling to find treatments – and one day, a cure – for the cruel and devastating condition that is Motor Neurone Disease.  We have invested millions of pounds in supporting them in that fight, but we are committed to doing more.

“Today’s measures will cut unnecessary red tape, getting that vital funding to the front line faster, as well as investing more in the crucial work that our world-leading scientists and researchers are doing.”

£50 million was committed to MND research over the next five years by the Department of Health and Social Care and the Department for Business, Energy and Industrial Strategy last year, reinforcing progress being made by the UK’s world-leading scientists.

Recent successes include stem cell research by the Francis Crick Institute to investigate the molecular processes that cause the disease; and the development by the UK Dementia Research Institute (DRI) of a new form of testing for MND, which is now being used in a clinical trial to assess the effectiveness of a new treatment.

Today the government is accelerating £29.5 million of the committed funding into specialist research centres and partnerships with leading researchers to reduce bureaucracy and help researchers access funding as quickly as possible.

The £29.5 million package includes:

  • £8 million for early phase clinical research for MND, speeding up innovative new treatments for patients through the NIHR Biomedical Research Centres, specialist research centres which bring together experts to translate scientific breakthroughs into potential treatments for patients.
  • £12.5 million to support the best discovery science at the UK Dementia Research Institute (DRI), recognising the fact that the underlying mechanisms of MND are shared with frontal temporal lobe dementia, presenting new possibilities for targeted drug development.
  • A £3 million translational accelerator investment from MRC (to be matched later by another £3 million from NIHR) to join up these investments with other relevant programmes such as the MND collaborative and the UK Dementias Platform (DPUK).
  • £1 million of government funding which was allocated in June 2022 enhance coordination of UK MND research by setting up a MND Collaborative Partnership, bringing together people living with MND, charities and MND researchers across the UK to discover meaningful MND treatments. This is co-funded by the medical research charity LifeArc and MND patient charities MND Association, My Name’5 Doddie Foundation and MND Scotland.
  • £2 million additional investment in this MND Collaborative Partnership to focus on gathering and analysing existing data on the condition to explore the underlying causes of MND and help develop breakthrough new treatments.

The remainder of the committed £50 million MND funding is available for researchers to access via NIHR and MRC. To support this work, the government has today published a joint NIHR/MRC Highlight Notice inviting outstanding researchers across the academic and life science sector to submit applications to an open call for the highest quality projects, responding to progress in science so breakthroughs can reach patients as quickly as possible.

NIHR and MRC are particularly looking for the opportunity to see ‘pull-through’ of treatments with early promise into clinical trials, as they emerge from the initial funding in this space. The NIHR and MRC already fund programmes across the whole translational research pipeline and anticipate funding scientifically excellent applications that will have a positive impact on patients’ lives, with the anticipation that this will increase the funded applications further over coming years over and above the initial commitment.

The funding will support researchers to better understand the disease and its related conditions, develop and test treatments and eventually give people living with the condition the chance of a better quality of life, and more good years with their loved ones.

CEO of the NIHR Professor Lucy Chappell said: “Today’s significant commitment to delivering Motor Neurone Disease research is a hugely welcome next step towards really tackling this debilitating illness.

“This detailed plan makes full use of our world-leading health research sector, and gives us the best chance of making truly impactful findings and treatments.

“Health research saves lives. We look forward to working with our researchers, partners and people living with Motor Neurone Disease to ensure the work outlined today is the best it can be.”

The government will continue to harness expertise and innovation, such as the work that is already underway at NIHR Sheffield Biomedical Research Centre where scientists are trialling new treatments to treat the condition. Promising trials have recently shown a delayed progression of the disease when the new drugs were given to patients.

The funding builds on the Life Sciences Vision, published in 2021 and sets out the government’s commitment to speed up innovative neurodegeneration and dementia research, so that new treatments reach patients faster.

Dr Catriona Crombie of LifeArc, on behalf of the MND Collaborative Partnership said: “The UK is leading the way in MND research. This new £2 million funding awarded to the MND Collaborative Partnership will help us to unlock the potential in patient data and could reveal new clues for scientists and researchers to develop new treatments.

“We are grateful the government has listened to the coalition of people living with MND, the MND scientific community and MND charities who have highlighted how vital and urgent MND research progress is. We look forward to continuing to work together to ensure the funding plans outlined today have the biggest impact and drive new treatments towards people with MND, fast.”

This boost to MND research is part of wider funding into neurodegeneration research, including funding to support pioneering clinical trials which have led to major advances in how the disease is understood.

This includes improving our understanding of how different types of MND are passed on genetically which could unlock new treatment options for patients using gene therapy.

The government will continue to harness expertise and innovation, such as the work that is already underway at NIHR Sheffield Biomedical Research Centre where scientists are trialling new treatments to treat the condition. Promising trials have recently shown a delayed progression of the disease when the new drugs were given to patients.

The funding builds on the Life Sciences Vision, published in 2021 and sets out the government’s commitment to speed up innovative neurodegeneration and dementia research, so that new treatments reach patients faster.

New £4.25 million grant kick starts UK-wide collaborative research effort to end motor neuron disease

£1 million for MY NAME5 DODDIE Foundation

·        £4.25 million research grant has been awarded that seeks that seeks to discover meaningful MND treatments within years, not decades  

·        Grant awarded by charities LifeArc, MND Association, My Name’5 Doddie Foundation and MND Scotland, together with government research organisations Medical Research Council (MRC) and National Institute for Health and Care Research (NIHR)

·        Funding awarded to researchers from King’s College London, University of Sheffield, University of Liverpool, University College London, University of Oxford and University of Edinburgh to establish a new UK-wide motor neuron disease (MND) research partnership to address problems hindering progress

·        Funding is a springboard for the MND community to develop plans for further ambitious and large-scale research projects, attract significant investment for MND, and encourage more centres to join the scientific mission to find treatments and ultimately a cure for MND

·        Generosity and fundraising efforts of charity supporters have played a big part in making this partnership a reality.

Global MND Awareness Day: A group of charities and government research organisations has awarded £4.25 million to MND experts at six UK universities to kick start collaborative efforts to end motor neuron disease (MND).

This new ‘MND Collaborative Partnership’ brings together people living with MND, charities LifeArc, MND Association, MND Scotland and My Name’5 Doddie Foundation, government bodies Medical Research Council (MRC) and National Institute for Health and Care Research (NIHR), with researchers from King’s College London, University of Sheffield, University of Liverpool, University College London, University of Oxford and University of Edinburgh.

The partnership team will work together to find solutions to address problems currently hindering MND research and seeks to discover meaningful treatments within years, not decades.

Members of this new UK-wide MND research partnership will work together and pool their expertise over three years to:

  • coordinate research effort and deliver maximum impact for people with MND
  • develop better tests to measure MND progression and that allow doctors to compare different drugs
  • improve MND registers so doctors can collect detailed, high-quality data about the disease, and understand which patients are most likely to respond to a particular drug and therefore recommend them for the trials most likely to benefit them
  • support people to take part in clinical trials more easily
  • develop more robust lab tests and models of disease to enable scientists to test theories about the disease and a pipeline of potential therapeutic agents that could ultimately be used as MND treatments.

They will also launch a major new study involving 1,000 people with MND from across the UK to better understand disease progression and how people respond to new and existing treatments.

MND (also known as amyotrophic lateral sclerosis, or ALS) is a devastating neurodegenerative disease affecting the brain and spinal cord. People progressively lose nearly all voluntary movement and need complex care, and around half of those diagnosed die within two years.

Six people are diagnosed with MND every day in the UK and the condition affects around 330,000 across the world. One person in every 300 will develop MND. The only licensed drug for MND in the UK has a modest effect on extending life – but no treatments are available that can substantially modify disease or cure the condition.

Professor Ammar Al-Chalabi, co-director of the research programme and Professor of Neurology and Complex Disease Genetics at King’s College London and Director of King’s MND Care and Research Centre said: “Our goal is to discover meaningful MND treatments within years, not decades. This landmark funding will bring the UK’s major MND research centres together for the first time in a coordinated national effort to find a cure.

“We now have a much better understanding of MND, so we must take this opportunity to accelerate development of new treatments and work together to move this knowledge into the clinic and help people affected by this devastating disease.”

Dr Catriona Crombie of LifeArc, the charity which has coordinated efforts from all funders to deliver this landmark MND Collaborative Partnership, said: “Over recent years, scientists have made great progress in MND, and this has opened up several promising avenues that could ultimately make a difference to patients.

“But there are some barriers hindering progress. For the first time, the MND community – that’s patients, funders, scientists and doctors – have come together to work out the problems and plan a way forward. As funders we are really excited at what this exceptional group of people could achieve for those affected with MND.”

David Setters, who is living with MND and has been involved in shaping the partnership said: “We welcome this collaboration, which paves the way for the £50 million government investment promised in November 2021, focused on making the first meaningful treatments for MND available within years, instead of decades. 

“It brings real hope to those of us living with MND to see our leading neuroscientists and charities coming together in this way. The prospect of easier access to clinical trials and the most promising therapies being fast-tracked gives us a much-needed boost and brings a real sense of purpose to the community.”

Professor Christopher McDermott, one of the co-directors of the research programme and Professor of Translational Neurology at the Sheffield Institute for Translational Neuroscience (SITraN) said: “We believe that by combining and coordinating our expertise, we will be more effective than if we work on projects in isolation.

“This partnership will provide the infrastructure to attract additional MND funding and enable further MND centres and researchers to join forces in the national effort to find effective treatments for MND. The partnership is the first step towards our goal to establish a national MND institute.”

Health and Social Care Secretary Sajid Javid said: “Motor neuron disease has a devastating impact on those who are diagnosed, their families and loved ones – but there is hope. 

“This new partnership is a highly ambitious approach which will drive progress in MND research and, backed by £1 million of government funding, will bring the MND research community together to work on speeding up the development of new treatments.The collaboration across government, charities, researchers, industry and people with MND and their families will take us one step closer to one day achieving a world free from MND.”

The Partnership was formed in 2021 to coordinate and pool funding for research into MND to speed up progress and help research to move towards the clinic and ultimately reach patients faster.

Funding for the MND Collaborative Partnership research grant totals £4.25 million and contributions are as follows: LifeArc (£1 million), MND Association (£1 million), My Name’5 Doddie Foundation (£1 million), MND Scotland (£250,000), Medical Research Council (MRC) (£500,000) and National Institute for Health and Care Research (NIHR) (£500,000).

Hearts back charity call to UK Goverment for £50 million

Heart of Midlothian FC is showing its support for 21/22 front of shirt partner, MND Scotland, by joining a call to the UK Government to invest £50 million into motor neurone disease (MND) research.

The Club proudly launched its new home kit for the 2021/22 season in July, with charity MND Scotland taking pride of place on the front of the jersey, thanks to an innovative two-year sponsorship deal with Dell Technologies.

Over the past year, the Club and its supporters have undertaken several fundraising activities as a tribute to former captain, Marius Zaliukas, who tragically lost his fight to MND in 2020.

Now, the Heart of Midlothian players are standing with MND Scotland, to urge the UK Government to invest£50 million over five years into targeted MND research.

The United to End MND campaign is being led by a coalition which includes MND Scotland, the My Name’5 Doddie Foundation, the MND Association, people living with MND, and neurologists from across the UK.

Currently the UK Government’s funding for targeted MND research stands at less than £5 million a year, which the coalition says is not enough. £50 million from the UK Government over five years would fund a virtual institute for MND Research, providing the infrastructure needed for accelerating treatments for MND.

Just last month the coalition delivered a personal letter from people living with MND to 10 Downing Street, which stated ‘MND is a death sentence’ but that ‘research has now reached a point where a cure or life-saving treatments can be found’.

It continued ‘The current piecemeal and protracted approach of funding individual projects will not deliver the life-saving treatments we need…we urgently appeal for action and investment now’.

Andrew McKinlay Heart of Midlothian Chief Executive, said: “We know all too well at Heart of Midlothian the devastating impact MND has, having lost one of our own, Marius Zaliukas.

“If there was a cure, or effective treatments, Marius could still be with us. That’s why we are here today to support this call to the UK Government, for more targeted investment into MND research. 

“The work MND Scotland does to support families living with this frightening disease is hugely important, as is their drive to find a cure for future generations. We are united with them to help end MND.”

Rachel Maitland, MND Scotland’s Chief Executive, said : “The support United to End MND has received from people in the community, politicians, clinicians, researchers and partners has been incredible to date, and we thank Heart of Midlothian for joining with us too.

“Too many lives like Marius’ have already been lost to MND, and people living with the disease today do not have time to wait for a cure. MND isn’t incurable, it’s just under-funded. Together, we will beat MND, but we cannot do it without the UK Government’s support.”

A bid for investment has been submitted to the UK Government’s Spending Review, and the call has already been debated in the UK Parliament after a petition to garner public support gathered more than 100,000 signatures in just three weeks.

Members of the coalition have also met with key politicians to explain the desperate need for the cash, to shore up the investment made by charities and industry.

To find out more about the campaign visit www.mndscotland.org.uk/united or tweet your support @MNDScotland @MNDAssoc and @MNDoddie5 using #United2EndMND.