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MND Collaborative Partnership cautiously welcomes new Government funding

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Motor neurons grown from stem cells using complex developmental biology techniques (differentiated these cells from induced pluripotent stem cells/iPSCs (not embryonic stem cells)). In blue is the centre of each cell (the nucleus), and in red is the main structural component of each cell (the cytoskeleton).

We cautiously welcome the announcement from the Government outlining how the £50 million investment commitment into motor neuron disease (MND) research made in November 2021 will be spent.

We’re delighted that the MND Collaborative Partnership, which we co-funded in June this year, will receive an additional £2 million from the Government as part of the £50 million they have committed.

The tranche of funding will go towards a programme of work to link up and analyse existing lab and clinical data from people with MND for researchers to use to explore the underlying causes of the condition and help develop breakthrough new treatments.

We are looking forward to working with the MND community and the Government to develop detailed plans for this work.

Outline plans for the £50 million

The outline plans were announced today by Health and Social Care Secretary Steve Barclay and Business Secretary Grant Shapps. By cutting red tape, the Government said that the funding will be made available to researchers as quickly as possible so they can progress faster towards treatments.

Here are the key points from today’s announcement:

  • £29.5 million of the committed funding will go into specialist research centres and partnerships with leading researchers
  • A further £20.5 million has also been committed for use in MND research to accelerate work on the most promising treatments and will be available to researchers to apply for through the NIHR and MRC. The NIHR/MRC Highlight Notice invites outstanding researchers to submit applications to an open call for the highest quality projects.

The £29.5 million package includes:

  • £8 million for early phase clinical research for MND, speeding up innovative new treatments for patients through the NIHR Biomedical Research Centres, specialist research centres which bring together experts to translate scientific breakthroughs into potential treatments for patients
  • £12.5 million to support discovery science at the UK Dementia Research Institute (DRI), recognising the fact that the underlying mechanisms of MND are shared with frontal temporal lobe dementia, presenting new possibilities for targeted drug development
  • A £3 million translational accelerator investment from MRC (to be matched later by another £3 million from NIHR) to join up these investments with other relevant programmes such as the MND collaborative and the UK Dementias Platform (DPUK)
  • £1 million of government funding which was already committed in June 2022 to our , bringing together people living with MND, charities and MND researchers across the UK to discover meaningful MND treatments. This is co-funded by us, together with the MND patient charities MND Association, My Name’5 Doddie Foundation and MND Scotland
  • £2 million additional investment in this MND Collaborative Partnership to link up and analysing existing data from people with the condition to explore the underlying causes of MND and help develop breakthrough new treatments.

LifeArc’s Dr Catriona Crombie, on behalf of the MND Collaborative Partnership said:

“The UK is leading the way in MND research. This new £2 million funding awarded to the MND Collaborative Partnership will help us to unlock the potential in patient data and could reveal new clues for scientists and researchers to develop new treatments.

“We are grateful the government has listened to the coalition of people living with MND, the MND scientific community and MND charities who have highlighted how vital and urgent MND research progress is. We look forward to continuing to work together to ensure the funding plans outlined today have the biggest impact and drive new treatments towards people with MND, fast.”

The United to End MND campaign including people with MND, researchers and charities – MND Association, MND Scotland, My Name’5 Doddie Foundation and LifeArc issued the following statement:

“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.”

Building on our strategy

The news follows hot on the heels of our MND Translational Challenge, which we launched to the scientific community last week at the ALS/MND International Symposium.

Our Translational Challenges bring together partners and experts to focus their efforts on translation – to move lab discoveries that are ready to be translated down the research pipeline to ultimately transform healthcare in that area. We are committed to working with partners to deliver that transformational shift in MND.

Our MND Translational Challenge builds on the MND Collaborative Partnership and is a multi-million pound programme aiming to accelerate scientific innovation for people living with motor neuron disease. LifeArc intends to work with scientists in the UK and around the world. We ultimately aim to deliver new meaningful treatments for MND. As the drugs we help to develop will most likely halt or slow the decline, it will be crucial to give them to patients as early in their disease as possible.

We have also launched a £1 million Primer Fund that will enable researchers to develop solutions to accelerate MND diagnosis. We hope this fund will ultimately lead to patients being enrolled into clinical trials earlier and increase the chance of discovering new treatments faster. Researchers from anywhere in the world can apply for this funding.

Get involved

If you are interested in working with us or are personally affected by MND, please get in touch – we need your help to shape our work and ensure it is focused on the right areas to make a difference.

If you’d like to keep up to date with progress on our MND work sign up here.

Media contact

Hannah Severyn

Head of Media and PR at LifeArc

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