United to End MND: The work continues

A number of projects are now up and running within the UK MND Research Institute. These were made possible by initial partnership grants totalling £4.25 million which includes the Government’s £1 million Coalition investment, and additional funding from the MND Association, My Name’5 Doddie Foundation, MND Scotland and LifeArc.

All of this money is with researchers and funding several projects:  

Mobile technology helping scientists recruit patients to research and trials – the mobile digital app called Telemedicine in MND Research (TiM-R) will launch shortly.  

MND Biobank – blood samples and clinical information from people with MND are creating an extensive resource available to researchers shortly to launch in four UK centres before rolling out nationwide.  

Cell models – the first step to testing a drug is to test in cells. Researchers take skin cells from a patient, turn them into motor neurones, and then test the drug on those neurones. This has been done for years but each lab does it their own way – so results can be inconsistent across labs. For the first time ever globally, UK MND Research Institute researchers have developed a network of cell lines across multiple laboratories, all using the same sets of cells and protocols. That means any findings in any one lab will be a real result. The first cell lines are up and running and more are in being developed. 

The unified data support project, which received £2 million from the Government, is already underway. The team is setting up a data management forum for the MND Register, the biggest MND register in the world, currently registering more than 10,000 people with MND. People take part anonymously, but in the second phase of the study, importantly researchers will be able to link genetic samples to anonymised clinical information, providing vital insights.  

At the UK Dementia Research Institute (UK DRI), researchers are studying several neurodegenerative conditions, with many projects focused on MND. The Government’s £12.5 million has been transferred to the UK DRI. Under the MND umbrella are projects to help understand processes underpinning MND (including why individual motor neurones are affected differently in MND), and others developing new cutting edge models to test potential ways of treating MND (including stem cells).  

The Government gave £6 million to Dementia Platforms UK to fund a research programme that centres around data. This encompasses a number of 18-month long projects. To receive funding, each project must use data to answer a question about MND. This funding has now been delivered to research teams.

One of the funded projects is led by Professor Ammar Al-Chalabi from Kings College London, who received funding for his ‘digital twin’ project. In this project he will develop a virtual ‘patient simulator’ which can predict a patient’s response to a drug. The team plans to predict how someone’s disease would develop without a treatment, improve the design of clinical trials in MND and reduce the need for a placebo in trials. 

The EXPErimental medicine Route To Success (EXPERTS-ALS) programme has received £8 million from the Government.  

This exciting programme - a global first led by UK doctors and scientists - will screen potential drugs for MND. This will enable researchers to identify the drugs showing the most promise to be moved into larger clinical trials, to be tested against a placebo to prove benefit beyond doubt.

The programme will measure disease progression using biomarkers – molecules that can be measured in blood samples and act as a ‘flag’ of disease activity.  

The Government funding prompted a further grant of £3 million from charities, including the MND Association, to search for new biomarkers.

Much preparatory work has already been completed and EXPERTS-ALS is rapidly approaching being able to recruit participants.

Government funding being awarded via the Medical Research Council (MRC) makes up £20.5 million. This money has been awarded but researchers must apply to access it. As a result, some of the funding is in researchers’ hands already with some still available. Researchers are working collaboratively to ensure the basic science the money is invested in is coordinated.  

The Government, on Monday 12 December, announced it will accelerate distribution of the £50 million it pledged to invest in targeted MND research last year.

Secretary of State for Health and Social Care Steve Barclay revealed a plan to ensure £29.5 million of the funding was available for MND research in the coming months.

The below statement is from the United to End MND campaign, including people with MND, researchers and charities – MND Association, MND Scotland, My Name'5 Doddie Foundation and LifeArc.

We are pleased that Steve Barclay has listened to the MND community and now outlined how the long-awaited £50 million investment in targeted MND research funding pledged by the Government will be made available to researchers.

Our ideal scenario remains the same - to create a national MND research institute, as exists for many other diseases.

While Mr Barclay's plans stop short of that, they are a step forward and demonstrate a more streamlined approach to ensuring the funds reaching MND researchers. Although this roadmap gives us a reason to be cautiously optimistic, we would still like more clarity and to understand the detail, processes and timelines behind it. We’d welcome the chance to discuss the questions we have with Mr Barclay.

Getting to this point has taken a huge collective effort by people with MND, the MND scientific community and MND charities to impress how urgent and important dedicated MND funding is, upon the Government.

Already this coalition has resulted in money being used to kickstart work we believe is the springboard to meaningful partnerships and collaborations and the key to speeding up vital research. Now the mechanisms are in place for the Government investment to be accessed more efficiently, we expect that work to gain pace.

And, of course, the MND community don't have time to wait – over a third of people with MND die within a year of diagnosis. They need transparency, they need red tape removed, they need research to deliver treatments and ultimately a cure - fast.

United to End Coalition

While this news from the Health Secretary does not entirely simplify the process for MND researchers to access the funding, it does provide some much-needed clarity and we recognise that concessions have been made to remove some of the red tape. We appreciate this positive step forward and thank Mr Barclay for listening to the campaigners who have been urging Government to remove bureaucracy.

"Of course, our hope is that this money, in combination with continued investment from the MND Association and others, will further speed up research on the development of effective treatments for MND. What we, and the entire MND community want, is to see more of that translational research – the work that takes potential treatments from laboratories into clinics.

Dr Brian Dickie, Director of Research Development at the MND Association

In November 2021, the United to End campaign – led by people living with MND, the MND Association, MND Scotland, My Name’5 Doddie Foundation and neurologists – successfully secured a Government investment of £50 million to be targeted to MND research over the next five years.

And in a further pledge, following discussions with the coalition, the Government has agreed to direct the funding through a handful of applications each year rather than researchers having to make up to 300 applications for the £50 million which, they said, would further delay research.

We’re not stopping – of course. We will continue to work with Government to ensure every penny of the £50 million pledged is used to fund research targeted directly at MND. And we’ll be reporting regularly on the strides that are made as a result of that investment.

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Read the factsheet here

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