Coalition outlines strategy for step change in motor neuron disease research

13 February 2023

Following a productive roundtable with Health and Social Care Secretary, Steve Barclay, on 2nd February, the United to End MND coalition of researchers, charities and patients has begun mapping out the next phase of developments needed to make a step change for MND research.

Encouraged by discussions with the Secretary of State and his team, the coalition has identified a number of key areas to focus on to unlock the ring-fenced MND funding promised by Government and to accelerate the search for a cure:

•  Take the scientific plan originally submitted to government by the coalition and review it in detail to determine the most effective way for each element (Work Package) to be funded and delivered. This would be via a meeting in collaboration with the Medical Research Council (MRC), National Institute for Healthcare Research (NIHR), Health Data Research UK (HDRUK), Dementias Platform UK (DPUK), key researchers and other stakeholders. By mapping which funding streams would best serve each of the Work Packages, a clear, actionable plan can be determined. This will allow more efficient access to the £29.5 million of allocated Government funding, as well as the £20.5 million of promised funds yet to be allocated.
• Continue to progress the virtual MND Research Institute to provide a central point of focus and co-ordination for the MND research effort. Steve Barclay himself has recognised the benefits such an Institute can deliver, and offered further words of support at the roundtable meeting. Funding for infrastructure elements of the Institute is required, so we will also continue our discussions around this.
•  Set up meetings with UK Government officials, including the new Secretary of State for Science, Innovation and Technology, Michelle Donelan, and other Ministers in the Department of Health and Social Care, the Department of Science, Innovation and Technology, and the Department of Business and Trade. Constructive discussions with these individuals will be essential to agree the pathways for funding MND research now and in the future.
• Continue to engage with the bio pharmaceutical industry to encourage inward investment and support for the Institute and national MND research programme. We firmly believe that advances in MND research can deliver huge opportunities for UK plc and establish the UK as a science superpower with increased investment and focus.

Sean McGrath, Medical Strategy Lead at My Name’5 Doddie Foundation, commented: "We owe it to all those living with MND to continue to push for scientific advances so we can ultimately be rid of this brutal disease. This can only happen with investment in research via a dedicated MND Research Institute, and our ongoing liaison with government is an important part of that. But this investment from government has to be spent in the right way, on the most promising projects, and in an environment which attracts yet more funds from other stakeholders such as the bio pharmaceutical industry. The entire MND community of researchers, charities and people living with MND is committed to ensuring a co-ordinated and efficient approach so that none of the precious funds are wasted. Doddie's voice is with us, pressing for a cure for MND, and we won't stop in our mission to achieve this."