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United to End MND

MND charities and people with MND are calling on the UK Government to fund our search for a cure with a £50m investment.

The UK Government’s funding for targeted MND research stands at less than £5 million a year. That’s not enough.

We've joined forces with the My Name'5 Doddie Foundation - set up by rugby legend Doddie Weir - and the MND Association of England, Wales and Northern Ireland. Together, we're asking the UK Government to invest £50 million over 5 years to fund research into motor neurone disease.

Our progress so far

On Monday 12 July, with more than 110,000 signatures on our petition, started in the name of Doddie Weir, the campaign was the subject of a debate in the UK Parliament. On the same day, a Spending Review bid was handed in to the UK Government. This is urging the government to ring-fence £50million over five years in the spending review, expected towards the end of the year from Chancellor Rishi Sunak.

Following this, a personal letter from hundreds of people living with MND to the Prime Minister Boris Johnson, pleading for funding, was presented at 10 Downing Street on Tuesday 21st September, by sporting legends Rob Burrow and Stephen Darby, along with others with the disease.

In the lead up to this Doddie Weir and Euan MacDonald, founder of the Euan MacDonald Centre for MND Research, helped kickstart a nationwide ‘MND letter relay’ from Scotland to Westminster, to boost signatures on the letter. 

The letter states ‘MND is a death sentence’ but that ‘research has now reached a point where a cure or life-saving treatments can be found’. It continues ‘The current piecemeal and protracted approach of funding individual projects will not deliver the life-saving treatments we need…we urgently appeal for action and investment now’.

Why now?

Research into the causes and potential treatments for MND has progressed, with current trials offering real promise. But this progress is largely dependent on sufficient levels of investment.

And research costs money. Currently funding for MND research from charities outstrips that from government. Without government support this vital progress is in danger of halting. 

What is needed?

£50 million from the Government over five years would fund a virtual centre of excellence for MND Research, providing the infrastructure needed for accelerating treatments for MND. It will bring together advances in both clinical and core science research.

The institute will make a real difference to MND research by:

  • focussing on world-leading drug discovery and development
  • developing a sustainable MND trials platform
  • implementing a rigorous clinical research programme.

For more information on the case for the institute please start with our briefing. We also have a further paper aimed at a research audience.

Who is involved?

Only by working together will we find a cure and treatments to give hope to people with MND.

That’s why people with motor neurone disease, MND Scotland, the MND Association, the My Name’5 Doddie Foundation, researchers and clinicians are collaborating on this call for UK Government action. Some pharmaceutical companies have already expressed their support too.

Get involved

If you have any questions or ideas for the campaign, get in touch.

You can reach us by emailing policy@mndscotland.org.uk or by calling us on 0141 332 3903.

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“If you asked me 25 years ago if there would ever be a cure for MND, I would have said no. But now, in the next few years, I can honestly say that we will probably be able to stop MND in some forms of the disease.”

Ammar Al-Chalabi | Professor of Neurology and Complex Disease Genetics, Kings College London

Ammar Al-Chalabi | Professor of Neurology and Complex Disease Genetics, Kings College London