The MND Association issued a response this week to the government’s Secretary of State for Health and Social Care Steve Barclay’s comments.
He said the delay in the £50 million promise to fund MND research was due to the “quality of the research bids”, while also admitting the money “is there”.
Following the comments, MND Association have responded: “We are surprised and disappointed with Steve Barclay’s comments about access to the £50 million promised by the Government for targeted MND research.
“We are unclear which bids the Secretary of State is referring to as our coalition partnership has only submitted one so far. This was met with glowing reviews, regarded as extremely high quality and, indeed, was funded in full, although most of those funds came from the charities involved in our coalition.
“We would welcome a face-to-face meeting with Mr Barclay to clarify this situation, enabling us to work together to ensure the funds are allocated efficiently and effectively without researchers being tied up in red tape.
“People with MND are desperate for progress and as we have always said, do not have time on their side. Time is of the essence. The support the scientists are receiving from the patient community has shaped research plans and we are all keen to see this move forward as quickly as possible.”
The only funding MND has seen has been as a result of the amazing fundraising efforts of Kevin Sinfield in support of former team-mate Rob Burrow who suffers from MND.
However that could be about to change as a petition to force the government to provide an update on the release of £50 million for MND research gains signatures many of which have come from rugby league fans.
— Serious About Rugby League (@SeriousAboutRL) December 3, 2022
The petition now has 4200 signatures and at 10,000 the government will respond to the petition.
Many of those signatures have come from rugby league fans after it was struggling to get beyond 1000 till rugby league fans caught wind of it.