• £4.25 million research grant has been awarded 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.

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, My Name’5 Doddie Foundation and MND Scotland, 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.

We, together with 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.

About MND

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.

Working together to bring hope

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

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).

Get in touch

If you are a journalist and would like further information or wish to interview spokespeople or people living with MND, please contact: 

Ray Dunne, Senior Communications Manager, LifeArc
Email: ray.dunne@lifearc.org
Tel: +44 (0)7977 293132 

Notes to editors

About LifeArc

LifeArc is a self-funded medical research charity. Our mission is to advance translation of early science into health care treatments or diagnostics that can be fully developed and made available to patients. We have been doing this for more than 25 years and our work has resulted in a diagnostic for antibiotic resistance and four licensed medicines.

Our success allows us to explore new approaches to stimulate and fund translation. We have our own drug discovery and diagnostics development facilities, supported by experts in technology transfer and intellectual property who also provide services to other organisations. Our model is built on collaboration, and we partner with a broad range of groups including medical research charities, research organisations, industry and academic scientists. We are motivated by patient need and scientific opportunity.

LifeArc has several different funding mechanisms to invest in promising innovations to ultimately benefit patients. Our Philanthropic Fund provides grants to support medical research projects focused on translating rare diseases research. Our Early Ventures investment team invests in seed and Series A stage companies and is able to scale our investments further into later funding rounds. The ventures strategy focuses on investing in novel translational science and technology with a dual goal of generating financial returns to the charity and positive impact for patients.

Find out more about our work on www.lifearc.org or follow us on LinkedIn or Twitter.

About the MND Association

Founded in 1979 by a group of volunteers, the MND Association focuses on improving access to care, research and campaigning for those people living with or affected by MND in England, Wales and Northern Ireland. We are proud to take a leading role in the global fight against MND by funding ground-breaking research, facilitating collaboration, and raising vital awareness. The MND Association organises the International Symposium on ALS/MND, the largest medical and scientific conference on the disease, which attracts delegates from across the world to share the latest advances in research and treatment. At the end of December 2021, the MND Association had a research grants portfolio consisting of 87 grants with a total commitment of £15.2 million.

For more information, please visit www.mndassociation.org or contact us at communications@mndassociation.org.

About My Name’5 Doddie Foundation

My Name’5 Doddie Foundation has a clear vision of a world free of motor neuron disease. The charity was established by Doddie Weir and the trustees in November 2017 following Doddie’s diagnosis with MND. It was founded in response to his frustration at the lack of options given to MND patients – no effective treatment, no access to meaningful clinical trials and no hope.

The aims of the Foundation are simple:

  • To raise funds to aid research into the causes of MND and investigate potential cures.
  • To make grants to individuals suffering from MND, to enable them to live as fulfilled a life as possible.

For more information, please visit myname5doddie.co.uk or contact us on info@myname5doddie.co.uk

Connect with us on social media:

About MND Scotland

MND Scotland is the only motor neuron disease (MND) charity providing direct support to people living with MND in Scotland and the loved ones caring for them. When time matters most, we’re a helping hand of support, so people affected by MND can make their precious time count. We campaign to create long-lasting change to improve quality of life, and invest in ground-breaking MND research, and world-class clinical trials, to find a cure. To find out more visit www.mndscotland.org.uk.

About the Medical Research Council (MRC)

MRC funds research at the forefront of science to prevent illness, develop therapies and improve human health.

Founded in 1913 to tackle tuberculosis, the MRC now invests taxpayers’ money in some of the best medical research in the world across every area of health. Thirty-three MRC-funded researchers have won Nobel prizes in a wide range of disciplines, and MRC scientists have been behind such diverse discoveries as vitamins, the structure of DNA and the link between smoking and cancer, as well as achievements such as pioneering the use of randomised controlled trials, the invention of MRI scanning, and the development of a group of antibodies used in the making of some of the most successful drugs ever developed.

Today, MRC-funded scientists tackle some of the greatest health problems facing humanity in the 21st century, from the rising tide of chronic diseases associated with ageing to the threats posed by rapidly mutating micro-organisms.


About the National Institute for Health and Care Research (NIHR)

The mission of the National Institute for Health and Care Research (NIHR) is to improve the health and wealth of the nation through research. We do this by:

  • Funding high quality, timely research that benefits the NHS, public health and social care
  • Investing in world-class expertise, facilities and a skilled delivery workforce to translate discoveries into improved treatments and services
  • Partnering with patients, service users, carers and communities, improving the relevance, quality and impact of our research
  • Attracting, training and supporting the best researchers to tackle complex health and social care challenges
  • Collaborating with other public funders, charities and industry to help shape a cohesive and globally competitive research system
  • Funding applied global health research and training to meet the needs of the poorest people in low and middle income countries.

NIHR is funded by the Department of Health and Social Care. Its work in low and middle income countries is principally funded through UK Aid from the UK government.