Rob Burrow frustrated with Government over delay in £50m MND research

However, eight months on, scientists have yet to see the money, leaving Burrow frustrated and angry.

“I have 100 things to say to this Government but I will keep it to one,” Burrow said.

“People with MND don’t have the luxury of time to wait. It is as if there is no rush to give our scientific researchers the opportunity to join the race to find an effective treatment while six people die each day from motor neurone disease.

“There is blood on your hands, this Government and the civil servants, with the red tape you are putting up.”

Rob Burrow wife wants a cure found for MND

Burrow’s stance is supported by his wife and full-time carer Lindsey. She 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 research into the disease.

“In September 2021, the Prime Minister and Health Secretary pledged £50m for research but no money has been received by the MND researchers yet.

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

A Department of Health and Social Care spokesperson said: “We have invested millions of pounds into motor neurone disease research – leading to major advances in how the disease is understood.

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

“We remain committed to spending at least another £50million to help find a cure. Researchers can apply for funding at the National Institute for Health and Care Research and UK Research and Innovation.”

Burrow opens up on his condition

Burrow was given two years to live at the time of his diagnosis. He says his condition has not worsened since he started taking an immunotherapy drug used in clinical trials for various types of cancer.

“I’ve been using proluekin in the form of IL-2,” he said. “I’ve been on this drug for almost two years. I have not got any worse since I have been on 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.

He has maintained his famous sense of humour despite being confined to a wheelchair; and being able only to speak with the aid of voice technology.

“I’ve been this way for 18 months now and I have got used to being like this,” he said. “I have been a professional box-set watcher.”

With close friend Kevin Sinfield, Burrow recently completed the Leeds 10k in a specially adapted wheelchair. The pair raised money for the Leeds Rhinos Foundation and the Rob Burrow Centre for MND.