Rob Burrow heads to Downing Street calling for £50 million for MND research

Leeds Rhinos legend and MND campaigner Rob Burrow joined Motor Neurone Disease campaigners as they delivered a petition to Downing Street calling for £50 million of funding for research into the disease.

The open letter, to the Prime Minister, contains fifty pages of signatures from hundreds of people and urges the government to direct the money towards targeted research over five years.

Burrow caught the train to London on Tuesday morning ahead of meeting campaigners in the capital.

Joining Burrow at Number 10 was former assistant chief constable Chris Johnson and fellow ex-rugby player Doddie Weir. The letter said the government's investment of less than £5m a year into MND research was "insufficient for a disease of this nature".

It added that treatments for MND were closer than ever before, and that scientists have proposed coordinated action to accelerate treatments.

In the House of Commons on Tuesday (21 September), Colne Valley Conservative MP, Jason McCartney asked the secretary of state if he would meet with the MND association to discuss a funding proposal being championed in Westminster Burrow.

Business Secretary Kwasi Kwarteng said: "Last fiscal year UKRI spent £15.9 million on MND research and in the previous parliament 2017-2019 we announced £20 million to support the work of medical research charities which are now being impacted by Covid."

Kingston upon Hull East Labour MP Karl Turner said: "Does the minister agree with Rob, and Scotland's rugby union star Doddie Weir... we need to act now minister, now, to increase research funding into this devastating, debilitating and life-limiting disease?"

Mr Kwarteng responded: "I don't know Rob but I'm very pleased that his tireless work has been raised today."

What is MND?

MND, or amyotrophic lateral sclerosis (ALS), is a devastating, rapidly progressive and relatively common neurodegenerative disease that affects the motor neurones in the brain and spinal cord that connect the nervous system and muscles to enable movement of the body.

The messages from these nerves gradually stop reaching the muscles, leading them to weaken, stiffen and eventually waste.

MND affects approximately 5,000 people in the UK and the life-time risk of developing the condition is approximately one in 400. Approximately 10% of MND cases are inherited, but the remaining 90% are caused by complex genetic and environmental interactions which are not well understood.

There is currently no known cure.