United to End MND “disappointed” by UK government no to funding

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The United to end MND The campaign in the UK is “disappointed” that the country’s government has not accepted its call to invest £ 50 million (around $ 68 million) in targeted research into motor neuron diseases (MND). MNDs are a group of progressive neurological disorders that include amyotrophic lateral sclerosis, commonly referred to as ALS.

According to the organizing coalition of the campaign, made up of MND Association, MND Scotland, and the My Name’5 Doddie Foundation.

According to the campaign, the current UK government funding for targeted investigations is less than £ 5million (around $ 6.8million) per year, although the government has put the figure at around £ 15million ( over $ 20 million).

The United to End MND coalition had requested the funding as part of the UK government’s fall 2021 budget and expenditure review.

“We are disappointed that our expenditure review submission for a five-year £ 50million investment in a virtual MND translational research institute was not accepted,” the MND association said in a statement. . Press release on behalf of United to End MND.

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“We believe this would have been the fastest and most effective way to accelerate our scientists’ current promising progress towards the first significant treatments for this brutal disease,” the group said. “This would have attracted considerable investment to the UK from the major pharmaceutical companies, in line with the government’s ambition to make the UK a ‘science superpower’.”

The UK’s Medical Research Council (MRC) funds research, grants and postgraduate studies that aim to improve people’s health. The non-departmental public body is funded by the Department of Economic, Energy and Industrial Strategy (BEIS).

Meanwhile, the Department of Health and Social Affairs (DHSC) is primarily responsible for government policy on health and welfare for adults. The UK’s National Institute for Health Research (NIHR) funds health and care surveys.

“We continue to challenge the government’s significant overestimation of spending on targeted research for MND through BEIS / MRC and DHSC / NIHR,” the association wrote. “A positive response would have offered hope to the thousands of people in the UK who are affected by MND, whether as a patient, family member or friend.”

The problem, argues the coalition, is that the government’s current funding mechanisms are too fragmented and ineffective to handle current MND research. The coalition, however, said it was “encouraged” by the continued statements made by some high-level government officials that they understood the situation and were seeking resolutions.

“We call for an immediate refocus on these efforts,” coalition members said. “We just can’t wait for the [200,000-plus] people alive in the UK today, who have not yet been diagnosed, who will die of MND without meaningful treatment and ultimately without a cure. “

The institute proposed by United to End MND would have focused on drug discovery and development, developing a sustainable platform for MND trials, and implementing a rigorous clinical research program.

“Our researchers are on the cusp of a breakthrough in finding treatments for MND, but they need a significant injection of funding,” said Sally Light, CEO of MND, who said that ‘she was “so disappointed on behalf of everyone in the MND community” with the lack of funding from the UK government.

“We will continue to do what we can as a charity, but we will also continue to fight for the investment that will give hope to the 5,000 people in the UK who live with it. [MND] right now, ”she said.

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