United to End MND: The work continues

December 2022 update

The Government has today (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."

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

"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."

United to End MND group outside Downing Street

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.

How did the campaign start?

The United to End MND campaign began in 2019 with people with people with MND, neurologists and charities joining force for the first time. With research into MND progressing faster than ever, we all recognised that with a concerted effort treatments and, ultimately a cure, could be found in years rather than decade.

Why is the campaign so important?

Research into the causes and potential treatments for MND has progressed, with current trials offering real promise. But that progress is dependent on more research which needs investment. Funding for MND research from charities has outstripped that from Government for many years. The only way to make a real difference is to do more research, and that needs more investment.

Who was involved?

The coalition was led by people with MND, neurologists, the MND Association, MND Scotland and My Name'5 Doddie Foundation. We were joined by media outlets and thousands of people who signed petitions, lobbied their MPs and wrote letters. The success of the campaign is down to every single person’s input. Together we can beat MND.

How did the Government make the announcement?

On Sunday 14 November, then Prime Minister Boris Johnson said: “We are going to throw the full weight of government, industry and civil society behind a new British-led scientific mission to transform the fight against this devastating disease.”

Will the Government honour Mr Johnson’s pledge?

We have sought, and received, assurances from the relevant officials that the £50 million investment pot is not at risk, despite the change of leader.

What’s next?

We are continuing to work hard to ensure the £50 million from Government is targeted to research which will make a real difference. Our experts along with neurologists and the other charities are continuing to talk to the Government to ensure they deliver on their promise.

You may be interested in reading more about the work and the steps involved in this campaign, which are highlighted in the documents below.