Researchers optimistic compromise will allow them to access Government’s £50 million commitment

29 June 2022 News

After months of hard work from the coalition behind the United to End MND campaign, researchers believe they have a solution to access the £50 million funding committed by the Government to motor neurone disease (MND) research.

The United to End MND campaign began in 2019 with people living with MND, neurologists and charities – the MND Association, MND Scotland and My Name’5 Doddie Foundation – joining forces for the first time to urge the Government to invest in targeted MND research.

The Government announced their commitment of a £50 million investment into MND research in November 2021. But during numerous talks with civil servants to establish how to access the funds, researchers were told they would have to make around 100 to 300 applications for the £50 million which they said would delay research ‘by decades’, as applications take weeks or months to process.

Thanks to the tenacity of the coalition, a compromise has now been reached which would see the researchers submit around three or four applications a year for funding.

Speaking to the Sunday Express, leading neurologist Professor Ammar Al-Chalabi from King’s College London said:

“It is not our preferred method but it is a compromise we can work with. For 300 applications we would have had to make two or three applications every week to get the £50 million within the five years which was ridiculous. This is the best way forward and we are optimistic.”

Sally Light, Chief Executive of the MND Association said:

“We have been striving to show the government that the current system – applying hundreds of times for small pots of money – will not accelerate progress in MND research in the way we hope, and we are pleased they have finally listened to our concerns. It is important to recognise the relentless dedication of our MND community and the impact they have had to make this happen. They have emailed Ministers in their thousands, used social media to keep MND on the agenda of those in power, and shared their stories to highlight what progress in MND research would mean to them. Thank you.”