£50 million funding into MND thanks to former Bromsgrove cop

Chris Johnson, a former assistant chief constable for West Midlands Police, joined rugby and football stars Rob Burrow, Doddie Weir and Stephen Darby to deliver an open letter to Number 10 in September, demanding the government to invest £50 million in MND research over five years.

This week, the government has announced at least £50 million will be made available specifically for research to help find a cure for MND which Chris describes as a ‘glimmer of hope’.

The funding is part of a wider investment of £375 million to improve understanding and treatment for a range of neurodegenerative diseases.

Chris Johnson and his fellow campaigners outside Downing Street.

Mr Johnson, aged 54, was diagnosed with MND in September 2018 which led him to retire from policing in September 2020 after 29 years of service.

He said when he was diagnosed, he did not know a huge amount about the disease, but he was horrified to learn that 1 in 300 people are diagnosed with the condition.

“The disease is described as rare, but it isn’t,” said Chris.

“Up until now there has been a conversation with your consultant whereby they say we don’t know why you have the disease, and we don’t have a cure – now there’s a glimmer of hope.

“There is no golden bullet for MND, but thanks to this money there is light in the distant future.

“I hope and pray that this will make the prognosis better and turn an incurable condition into treatable.”

Chris Johnson, outside 10 Downing Street.

The government say the funding will accelerate progress across the UK to find better treatments for MND and give people living with the condition the chance of a better quality of life.

Mr Johnson, who lives with his wife Sharon and two children in Bromsgrove, said the funding ‘genuinely feels like a turning point’.

“The news of this funding is really encouraging, and its not just about the money, it’s the principles that have been adopted – its how we used academic institutions across the country,” added Chris.

“There has been huge progression the last ten years, but the problem is the speed at which things are brought to trial.”

Chris and his wife Sharon with team from Primrose Hospice who have supported the family for the past few years.

There is currently only one drug licensed in the UK to treat MND – Riluzole – which slows the progression of the disease and extends someone’s life by a few months.

The government say the cash investment will allow scientists to understand how different types of MND are passed on genetically which could unlock new treatment options for patients using gene therapy.

Bromsgrove MP and Health and Social Care Secretary, Sajid Javid, said the disease can have a ‘have a devastating impact on people’s lives’ and he is ‘committed to ensuring the government does everything we can to fight these diseases and support those affected’.

Chris said when he handed his open letter to Number 10 Downing Street, he was surprised by the health secretary’s depth of knowledge.

“Sajid Javid asked some really insightful questions, and I was surprised about his depth of knowledge,” added Chris.

“I feel he understood that this proposal was different.

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“It is great that people have actually listened.

“Now when someone gets diagnosed in the near future, there’s light at the end of the tunnel.”