United2EndMND

Committed to the acceleration of MND research

United2EndMND is committed to promoting the acceleration of MND research towards meaningful treatments and, ultimately, a cure through a robust and collaborative scientific plan led and coordinated by leading UK neuroscientists and supported by patients, their families, the MND charities, government and industry. 

These remain the guiding principles for the United2EndMND coalition of patients, MND Association, MND Scotland, My Name5 Doddie Foundation, LifeArc and eminent neuroscientists at 6 research centres across the UK. The coalition developed the strategy for the campaign which led to the £50 million government investment promise and the setting up of the virtual UK MND Research Institute (UKMNDRI) in November 2023.

Funds received so far have been used to successfully establish the vital foundations for the sustainable ^{(see below)} infrastructure for MND research in the UK to progress novel and repurposed compounds from their discovery through to trials more efficiently. The Institute’s EXPERTS-ALS platform, globally unique, now provides industry and academia a rapid phase II option for drug candidates. You can find details here on the Institute’s website.

We continue to work with the coalition to ensure funds remaining as yet unallocated are directed to the scientific plan set out by the UK MND Research Institute. We are currently engaging with MPs and relevant government agencies (the MRC and NIHR) to ensure the continued release of these funds without unnecessary red tape, so that the scientists can concentrate on what they do best.

If we cannot overcome barriers to the allocation of the promised funds, we will undertake appropriate high profile activities to bring this to the attention of senior ministers at the relevant government departments (DHSC and DSIT). We will work with our network of senior politicians, advisers, scientists, charity executives, high profile patients and the media to achieve this.

Furthermore, our scientists are now working on the second phase of the Institute programme to build on progress made in the first phase. Importantly, this will reinforce the focus on “drug and target discovery” i.e. accelerating both the search for new disease targets and promising repurposed or novel therapies that might have truly effective disease modifying effects. 

We will be seeking further long-term funding from government and other sources to finance this crucial work. 

Sustainability is a key feature of the scientific plan, but what do we mean by this? In most cases, the government awards funds for research, project by project. Once a project is complete, its resources and results (positive or negative) are often torn down and data possibly lost. The UKMNDRI, together with the United2EndMND coalition, is seeking significant funding over a longer timeframe to ensure…

– Knowledge is retained from each project to aid future research.

– Industry is attracted to conduct trials in the UK.

– The very best researchers and clinicians are retained so that knowledge is maintained.

In this way, we can help ensure the wheel does not have to be constantly reinvented for each research project. Ultimately, this will move us more swiftly towards tangible improvements for patients and their families.

To understand the challenges our scientists continue to face, please see the documentation from the early days of our campaign, including the strategic work-plan descriptions. If you were to read only one of the documents, we recommend the one page summary of the principle of a single application, as it illustrates the massive complexity of submitting funding applications.

Patients United2EndMND did not appreciate the level of complexity when we started the campaign 5 years ago. The campaign did much to reduce the amount of red tape that funding applications have to go through, but major changes to the system are still required, in our view.

This is why the United2EndMND coalition always ensures that each ask of government is supported by detailed work-plan proposals that will stand up to extensive international peer review. UK Government agencies will not fund projects without such detail.

We are acutely aware that new patients are being diagnosed every day while, tragically, many others are passing. While we all wish for meaningful treatments and a cure tomorrow, the sheer complexity of MND/ALS cannot be underestimated. We believe a collaborative and coordinated approach is the best way to accelerate research.

We invite the community to fight with us alongside the leading neuroscientists and MND charities to ensure the patient voice is heard at the highest levels.