United to End MND update

Members of the United to End MND coalition have met with Minister for Care, Gillian Keegan MP, to discuss the Government’s £50m commitment to fund motor neurone disease (MND) research.

The coalition, which includes people living with MND, MND Scotland, MND Association, My Name’5 Doddie Foundation and UK MND researchers, is continuing to engage with the UK Government on how and when the committed £50m will be released.

Representing the coalition at the meeting, which took place 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. The meeting was also attended by Steve Baker MP, who requested the meeting in March, and Andrew Lewer MBE MP. Both Ministers have championed the campaign in Parliament.

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.

Since the announcement of the funding last November, the coalition have been working hard to encourage Government to see the benefits of an innovative, single application for the funds.

A pilot project with the medical research charity, LifeArc, totalling £4.25 million (consisting of £3.25m of charity funding and just £1m of government funding) has been under peer review since January 2022. It was anticipated that this project would become the implementation ‘vehicle’ for the £50m investment.

This differs from the traditional Government funding process, but MND researchers argue this existing method would mean wasting precious time on numerous funding application forms rather than focusing on their important research.

Chris McDermott, Professor of Translational Neurology at Sheffield, said: “Our staff would do nothing else but write these grants. We wouldn’t be doing the science. We’d be back to decades rather than years [in terms of time taken to find meaningful treatments and a cure for MND].”

Speaking to the BBC after the meeting, Lee Millard said: “We need to make sure [the funding] comes through. I hope to be around to make sure it does, because I’m not going to relent.”

Prior to the meeting on 26 April, a group of scientists representing the leading MND research centres wrote a letter to the Minister outlining the benefits of a single peer-reviewed application. 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. You can read the letter here.

To find out more about the campaign highlights visit www.mndscotland.org.uk/united.