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United to End MND

MND charities and people with MND are calling on the UK Government to fund our search for a cure with a £50m investment.

Following our call for funding, the UK Government has committed £50 million into targeted MND research, bringing new hope to the MND community. Now, we need more clarity on the delivery of this promise. 

In 2021, we joined forces with the MND Association, the My Name'5 Doddie Foundation, researchers and people living with MND to urge the UK Government to invest £50 million over five years to fund research into motor neurone disease. On Saturday 13th November, the UK Government answered our call and pledged £50 millon to accelarate the development of meaningful treatments. 

How will these funds be delivered?

The UK government’s £50million commitment to a new MND Translational Research infrastructure is an amazing funding boost.

But it can only fully realise the ambitions of the MND community and researchers by the streamlining of grant application processes. The United to End MND coalition has now released a one page brief on this important subject. We are currently in discussions with the UK government on the precise timetable of funds release.

The MND patients who founded this campaign say: "We make no apology for politely requesting that the funds are fully set aside, reserved and easily accessible. Our proposal is fully aligned with the UK government’s Life Sciences Vision and the learnings from covid-19, where thinking differently enabled rapid acceleration of science."

Read the United to End MND single application process here.

Ahead of a coalition meeting with Minister for Care, Gillian Keegan MP, on 26 April 2022, a group of scientists representing the leading MND research centres have written a letter to the Minister outlining the benefits of a single peer-reviewed application for the delivery of the £50m government investment. A similar letter was also written to the Minister for Science, Research and Innovation, George Freeman MP, with copies sent to Sajid Javid MP and Kwasi Kwarteng MP. Read the letter here.

Representing the coalition at the meeting on Tuesday 26 April, was Professor Ammar Al-Chalabi, Professor of Neurology and Complex Disease Genetics at King’s College London, Sean McGrath, Medical Strategy Lead at the My Name’5 Doddie Foundation, and Lee Millard, who is living with MND.

As well as suggesting that funding could be released from August this year, the Government was able to confirm the £50m remains dedicated for MND research.

But further work with civil servants and Government is urgently needed to agree how the funds will be distributed in a way that satisfies governance but is effective and timely for people living with MND. The United to End MND coalition is determined to push this through as quickly as possible and already a follow up meeting is scheduled for early May.

How did we get here?

Two years ago the United to End MND campaign started with a group of five patients, determined to drive forward the search for a cure for this devastating disease, for which there are currently no effective treatments. 

Together with MND Scotland, MND Association and My Name'5 Doddie Foundation, leading researchers and neurologists, and others living with the disease, 'United to End MND' was born. The campaign called for the UK Government to fund £50 million into targeted MND research. 

In March 2021, a petition was launched in the name of former rugby star Doddie Weir, and soon gained over 100,000 signatures from the public in support of our call to the UK Government. The petition was debated in the UK Parliament in July 2021 and on the same day, a Spending Review bid from the campaign coalition was handed in to the UK Government. 

Following this, a personal letter from hundreds of people living with MND to the Prime Minister Boris Johnson, pleading for funding, was presented at 10 Downing Street on 21st September, by sporting legends Rob Burrow and Stephen Darby, along with others with the disease.

The United to End MND coalition expressed disappointment following the announcement of the Autumn Budget and Spending Review 2021, where our call was not included.

Now, the UK Government has taken action and announced its commitment to invest £50 million over five years into target MND research. 


 

What will the funding do?

This £50 million from the Government will fund a virtual centre of excellence for MND Research, providing the infrastructure needed for accelerating treatments for MND. It will bring together advances in both clinical and core science research.

The institute will make a real difference to MND research by:

  • focussing on world-leading drug discovery and development
  • developing a sustainable MND trials platform
  • implementing a rigorous clinical research programme.

For more information on the case for the institute please start with our briefing. We also have a further paper aimed at a research audience.

Get involved

Thank you to everyone who joined our campaign and contributed to this incredible success. We will continue funding pioneering MND research across the UK to help bring us closer to finding a cure. If you can, please join us by donating today

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“If you asked me 25 years ago if there would ever be a cure for MND, I would have said no. But now, in the next few years, I can honestly say that we will probably be able to stop MND in some forms of the disease.”

Ammar Al-Chalabi | Professor of Neurology and Complex Disease Genetics, Kings College London

Ammar Al-Chalabi | Professor of Neurology and Complex Disease Genetics, Kings College London