13 February 2023 Research

- United to End MND coalition of researchers, charities and patients working together with Government to accelerate progress with promised MND funding
- Follows roundtable and meeting with Health and Social Care Secretary, Steve Barclay

Following a productive roundtable with Health and Social Care Secretary, Steve Barclay, on 2 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.

Representing the United to End MND coalition, Catriona Crombie from LifeArc said:

"We were heartened by the constructive discussions at the roundtable with Steve Barclay and his team, but know that concrete actions are key to delivering on the promises agreed. It was encouraging to hear the Government and civil servants align with our desire for more streamlined and co-ordinated applications, and we will work hard to continue to ensure funds are accessed in the most efficient way possible. To hear that Government is willing to provide additional funding beyond the promised £50 million for MND research is very welcome and testament to the ongoing efforts of the coalition and the MND community in highlighting how MND is not incurable, just underfunded. With the right investment and plan, we know a step change in MND research is possible."

Find out more about the United to MND campaign