Rob Burrow: Government has ‘blood on its hands’ over delay in £50m MND investigation | rugby league news

“People with MND don’t have the luxury of time. It’s like there’s no rush to give our scientific researchers a chance to find an effective treatment while six people die every day from MND. There’s blood on their hands, this government and the officials” – Rob Burrrow

Last update: 07/19/22 11:32 am

There was a special moment for Leeds Rhinos legend Rob Burrow when the whole of St James' Park cheered him on during their Magic Weekend match against Castleford Tigers earlier this month.

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There was a special moment for Leeds Rhinos legend Rob Burrow when the whole of St James’ Park cheered him on during their Magic Weekend match against Castleford Tigers earlier this month.

There was a special moment for Leeds Rhinos legend Rob Burrow when the whole of St James’ Park cheered him on during their Magic Weekend match against Castleford Tigers earlier this month.

Rob Burrow says the government has “blood on its hands” for being late in delivering on a promise to provide £50m for efforts to find a cure for motor neuron disease.

The 39-year-old former Leeds and Great Britain player has become a benchmark in the MND awareness campaign, having been diagnosed with the terminal illness in December 2019.

The government pledged last November to make £50m available to the Motor Neuron Disease Association as part of a £375m investment in neurodegenerative disease research but, eight months later, scientists still they have not seen the money, leaving Burrow frustrated and angry.

“I have 100 things to say to this government, but I will limit myself to one,” Burrow told the PA news agency.

“People with MND can’t afford to wait. It’s like there’s no rush to give our scientific researchers the opportunity to join the race to find an effective treatment while six people die every day from motor neuron disease.

“There is blood on your hands, this government and the officials, with the bureaucratic procedures that you are putting in place.”

Burrow, 39, was diagnosed with the terminal illness in December 2019.

Burrow, 39, was diagnosed with the terminal illness in December 2019.

Burrow’s stance is supported by his wife and full-time carer, Lindsey, who said: “I am hopeful that one day a cure will be found, but we need the UK government to support people with MND and provide more funding for disease research. .

“In September 2021, the Prime Minister and Health Secretary pledged £50m for the research, but the MND researchers have yet to receive any money.

“A third of people with MND die within a year of diagnosis and don’t have time to wait.”

The Burrow family spoke about their charity work and the shirts they designed for Leeds Rhinos' Magic Weekend earlier this month against Castleford Tigers.

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The Burrow family spoke about their charity work and the shirts they designed for Leeds Rhinos’ Magic Weekend earlier this month against Castleford Tigers.

The Burrow family spoke about their charity work and the shirts they designed for Leeds Rhinos’ Magic Weekend earlier this month against Castleford Tigers.

A spokesman for the Department of Health and Social Care told PA: “We have invested millions of pounds in motor neuron disease research, which has led to major advances in understanding the disease.

“For example, the funding has supported clinical trials of a repurposed drug, Triumeq, which has shown promise in reducing a type of virus in the brain that is thought to kill motor neurons.

“We remain committed to spending at least a further £50m to help find a cure and researchers can apply for funding from the UK’s National Institute for Health and Care Research and Research and Innovation.”

Burrow, who was given two years to live at the time of his diagnosis, says his condition hasn’t worsened since he started taking an immunotherapy drug used in clinical trials for several types of cancer.

“I have been using proluekin in the form of IL-2,” he said. “I have been taking this drug for almost two years and have not gotten worse since taking this cancer drug.”

Burrow has provided an update on his battle with MND in a new chapter of his autobiography, ‘Too Many Reasons to Live’, now available in paperback, and has maintained his famous sense of humor despite being confined to a wheelchair. wheels and power just to talk with the help of voice technology.

“I’ve been like this for 18 months and I’ve already gotten used to being like this,” he said. “I’ve been a professional box spotter.”

With close friend Kevin Sinfield, the former Leeds and England captain, Burrow recently completed the Leeds 10km in a specially adapted wheelchair to raise money for the Leeds Rhinos Foundation and the Rob Burrow Center for MND.

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