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Boris Johnson gave thousands of people living with MND hope last November by committing the money over five years for research to find effective treatments.

His pledge came four months after the Sunday Express launched our Fund The Fight To Cure MND crusade and joined forces with a coalition of leading patients, scientists and charities.

After being told by civil servants they would have to make multiple applications for small chunks of the funding each time, which could delay finding a cure by years, the United2EndMND coalition met with Care Minister Gillian Keegan, Steve Baker MP, Andrew Lewer MP and senior civil servants last week.

They stressed the importance of a single application for the £50million funding to allow the scientists to focus on research instead of filling out forms.

Lee Milliard, who was diagnosed eight years ago with a slowly progressing form of the debilitating disease, said: “It was a difficult meeting.

“It was made clear the funds are available.

“However, the expected method for providing the funds to the work plan that the United2EndMND coalition has laid out is hitting some bumps in the road which were not resolved in the meeting.

“I am cautiously optimistic these bumps can be smoothed, but I have to admit that I am very concerned.”

A further meeting is planned next week.

A Department of Health and Social Care spokesman said: “We have invested millions of pounds on clinical trials and remain committed to spending at least another £50million to help find a cure.”

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