£4.25 million grant kick starts UK-wide effort to end MND

We are delighted to be part of a group of charities and government research organisations, who have awarded £4.25 million to MND experts at six UK universities, to kick start collaborative efforts to end motor neuron disease (MND).

Thanks to our incredible fundraisers and donors MND Scotland has been able to invest £250,000 in the partnership, which will work together to find solutions to address problems currently hindering MND research and aims to make big progress towards the ambition of making MND treatable within years, not decades.

This new ‘MND Collaborative Partnership’ brings together people living with MND, charities MND Scotland, LifeArc, MND Association 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.

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.

Together, we 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.

Dr Jane Haley, MND Scotland’s Head of Research, said: “This is a very exciting moment for UK MND research and shows what can be achieved by working in partnership with our charity colleagues at MND Association, My Name’5 Doddie Foundation and LifeArc, as well as government funders. Thanks to the incredible fundraising by supporters of all these charities, together we have been able to fund an exceptional group of researchers, across 6 universities, who will work collaboratively to deliver a UK-wide integrated programme of MND research that seeks to accelerate the discovery of meaningful treatments for MND.”

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.”

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.’

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.’

To read more about the partnership visit LifeArc, or to help us continue the search for a cure you can donate today.