Northampton Mum with Motor Neurone Disease helps secure £50 million for research into cure for the terminal condition

'This funding will drive MND research forward towards treatments and cures and will give people who have been diagnosed with this devastating terminal illness hope'

Monday, 15th November 2021, 6:43 pm
Updated Monday, 15th November 2021, 6:46 pm
Emma says that MP Andrew Lewer did "everything he possibly could" to get Parliament to support the bill

A Northampton mum has helped secure £50 million for research into a cure for Motor Neurone Disease (MND), a terminal disease that she, and around two in every 100,000 people in the UK suffer from each year.

The news comes as part of a massive £375 million investment by the UK Government to improve understanding and treatment for a range of neurodegenerative diseases over the next five years. £50 million of which will be going towards finding a cure for MND.

Emma Moss is a former deputy principle for a school in Northampton. She was diagnosed with MND at just 37, when her daughter, Veryan, was only one-year-old. Emma has helped to win support for the motion through her Facebook page Mummy with MND, which has over 27 thousand followers at time of publication.

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Seen from left to right: Emma Pond, Chris Johnson, Rob Burrow, Stephen Darby and Nicola Waters

She said: "I was experiencing nerve issues to start with like muscle twitching. I just had it in my head that it was just complications because of the C-Section [when Veryan was born]. I only wish it was.

"It's a disease that not enough people know about and they think it's a rare disease. When you look it up online you will see the word 'rare' again and again and again. The reason that MND appears rare is because it kills people so quickly. It kills 50 per cent within 2 years.

"What's especially hard for people like my doctor is that he had to sit me down, say 'yes, this is MND, yes, it is terminal and no, there is no cure'.

Advocates were dismayed on the previous release of the Spending Review by the Government, which featured no investment into the area of curing MND. Emma described this as "a massive blow". But Emma and her colleagues persisted, continuing to speak out and raise awareness about the cruel, yet ultimately curable disease.

The bill had to amass over 100 thousand signatures in order to be considered in Parliament

Chief amongst these advocates were Lee Millard and Dave Setters who, with the 'good fortune' of having a slower-developing version on MND, have been able to continue the fight for funds, even as their less fortunate friends could not.

Other key players who joined Emma at Number 10 included Chris Johnson, the former Assistant Chief Constable of West Midlands Police, Rob Burrow, the Leeds Rhinos 'superstar', Stephen Darby, the Premiership Football player and Nicola Waters who spent 15 years working in government, including trade policy, an EU Directive negotiation, and energy and climate change policy.

Some of the £50 million will go towards a new NIHR Research Unit. It will coordinate research applications for the new funding, reportedly encouraging more innovative studies with the ultimate goal of finding a cure.

Sally Light, chief executive of the Motor Neurone Disease Association (MNDA), which has a branch in Moulton Park, Northampton, said: "The announcement from the Government of a £50 million investment into targeted motor neurone disease research is the game-changing news everyone in the MND community has been hoping, and campaigning for.

"This funding will drive MND research forward towards treatments and cures and will give people who have been diagnosed with this devastating terminal illness hope.

"Everyone involved with the United To End MND coalition, like the MND Association, people with MND, neurologists, MND Scotland and the My Name’5 Doddie Foundation - are all so pleased the Government has listened and responded. It is no exaggeration to say the funds the Government has committed will change lives – and ultimately save lives.

Nicola Waters, is expected to meet with Kwasi Kwarteng, Secretary of State for Business, Energy and Industrial Strategy soon to discuss how the money will be distributed.

But advocates like Emma say that the work to cure MND "has only just begun".