A new UK-wide effort to drive progress in research to move closer to ending motor neuron disease (MND) has been backed by £4.25m in funding.
The 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), and researchers from six UK universities.
The partnership team – which brings together researchers from King’s College London, University of Sheffield, University of Liverpool, University College London, University of Oxford and University of Edinburgh – will work together to find solutions to address problems currently hindering MND research, with the ambition of discovering meaningful treatments within years, not decades.
MND (also known as amyotrophic lateral sclerosis, or ALS) affects the brain and spinal cord, causing people to progressively lose nearly all voluntary movement.
Six people are diagnosed with MND every day in the UK and the condition affects around 330,000 across the world. Around half of those diagnosed die within two years.
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.
Through the MND Collaborative Partnership, all parties will combine to share their expertise to develop better tests to measure MND progression, improve MND registers, support people to take part in clinical trials more easily and develop more robust lab tests.
There will also be a 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.
“We believe that by combining and coordinating our expertise, we will be more effective than if we work on projects in isolation,” says Professor Christopher McDermott, co-director of the research programme and professor of translational neurology at the Sheffield Institute for Translational Neuroscience (SITraN).
“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.”
Sajid Javid, Secretary of State for Health and Social Care, 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.”
Funding for the MND Collaborative Partnership research grant totals £4.25 million and contributions are: LifeArc (£1million), MND Association (£1million), My Name’5 Doddie Foundation (£1million), MND Scotland (£250,000), Medical Research Council (MRC) (£500,000) and National Institute for Health and Care Research (NIHR) (£500,000).
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