United to End MND - We did it!

United to End MND: The work continues

November 2022 update

We share the frustrations of so many within the MND community that one year on from the promise of funds for targeted MND research - £50 million over five years – none of it is in the hands of researchers.

We have had reassurances from the top of Government that the funds will be made available – it’s developing the mechanism for researchers to access the money in the most effective and efficient way that is causing the delay.

Along with neurologists, the people with MND who spearheaded the United To End MND campaign, and other charities – MND Scotland, My Name’5 Doddie and LifeArc – we are working closely with the Government to develop a clear and streamlined process. We are doing everything we can to speed up those discussions.

People with MND don’t have time to waste. The death of Doddie Weir has demonstrated that graphically and we owe it to him, the 5,000 people currently living with MND and the six people who are diagnosed every day to get the promised funds into the hands of researchers to push forward the vital work towards finding treatments and a cure.

In the meantime, we are pushing forward development of the virtual MND research institute, with work underway to establish the necessary processes and capacity.

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.

Professor Ammar

Keep in touch

To find out more about how to get involved in current and future MND Association campaigns join our Campaign Network.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262