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.
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.