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United to End MND statement following Roundtable with Steve Barclay

03 February 2023

A statement from the United to End MND coalition following the Roundtable with Health and Social Care Secretary Steve Barclay, which involved leading representatives from across the MND research community, people living with MND, and charities, LifeArc, MND Association, My Name’5 Doddie Foundation and MND Scotland.

Yesterday (Thursday 2 February) the United To End MND coalition welcomed the opportunity to meet with the Health and Social Care Secretary, Steve Barclay, and his team to discuss the future of MND research.

Our priority is to access the Government money that has been ring-fenced for MND research as quickly and efficiently as possible, so that scientific discoveries can be translated into potential treatments and ultimately a cure for this brutal disease. This means removal of red tape, increased co-ordination, and the channelling of funds via a virtual MND research institute that is currently being formed. Steve Barclay himself has recognised the benefits such an institute can deliver, and although yesterday’s meeting stopped short of embracing this as the funding model moving forward, there are plans for further discussions to agree a way forward.

While we are grateful for the MND funding from Government and for the fact that £29.5 million of the promised £50 million is now being allocated, we continue to highlight our desire to avoid funding via multiple disjointed pots of money. Our existing MND Collaborative Partnership structure, which forms the launchpad of the institute and has received resounding endorsement from international leading scientists, is already working to full effect with £4.25 million currently flowing through it for MND research in a co-ordinated way. If the remaining £20.5 million of Government funding can be accessed via this model, it would help ensure our talented scientists are using their time to focus on finding a cure for MND, rather than bureaucratic processes.

We truly believe we are on the cusp of major breakthroughs, and that MND can be the model for advances in other neurological diseases, as well as attracting investment for ‘UK plc’. Steve Barclay has the opportunity to oversee a huge step change in MND research, and we urge him to lead the charge in further collaborating with the MND community to achieve what we all have as our vision - a cure for MND.

United to End MND statement following Roundtable with Steve Barclay
United to End MND statement following Roundtable with Steve Barclay

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