Campaigners meet Ministers to discuss MND research funding

04 May 2022

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 neuron disease (MND) research.

Representing the coalition at the meeting, which took place on Tuesday 26 April, was Sean McGrath, Medical Strategy Lead at the My Name’5 Doddie Foundation, Professor Ammar Al-Chalabi, Professor of Neurology and Complex Disease Genetics at King’s College London, and Lee Millard, who is living with MND. The meeting was also attended by Andrew Lewer MBE MP and Steve Baker MP, who have both 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 has been working hard to encourage Government to see the benefits of an innovative, single application for the funds. This differs from the traditional Government funding processes, but MND researchers argue the existing methods 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.”

Sean McGrath, Medical Strategy Lead at My Name’5 Doddie Foundation, said:

"Whilst we're very grateful the Minister gave us her time to discuss the £50m funding, we still have a lot of work to do to ensure the money is accessed quickly and efficiently for our leading scientists who are on the cusp of new discoveries, but who urgently need funding to make it happen. The Prime Minister has pledged "a new British-led scientific mission to transform the fight against this devastating disease” but this can only be realised with innovative ways of working together. We owe it to all those living with MND to make this happen and we won't give up our fight."