Leading Research Into The Future

27 November 2020

The Foundation has joined forces with other key stakeholders in the motor neuron disease community and now asks the Government to support our initiative for an MND Research Institute.

One in 300 people will be diagnosed with motor neurone disease. Sadly, more than half of those diagnosed die within two years. Almost a quarter of a million people in the UK alive today will develop MND.

The scientific community is optimistic that, with the right level of funding, that will change.

Currently the UK government’s funding for targeted MND research has plateaued at around £3 million a year. That’s not enough.

Launching very soon, United To End MND brings together people with MND, researchers, clinicians and charities in a call to Government to fund a virtual centre of excellence for MND research leading us towards treatments and cures.

What is needed?

£50 million from the Government over five years would enable this virtual institute to provide 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.

A virtual institute would follow established models in other fields. Under its guidance, the already highly collaborative MND research community would act as one team without needing to be under one roof.

Why now?

Research into the causes and potential treatments for MND has progressed. Scientists in the UK are establishing world-leading drug discovery processes, with current trials offering a real promise of licensed treatment for some forms of MND in just two to three years. But this progress is largely dependent on sufficient levels of investment.

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

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 MND, the MND Association, MND Scotland, the My Name’5 Doddie Foundation, researchers and clinicians are collaborating on this call for Government action. Some pharmaceutical companies have already expressed their support.

“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

Find out more?

For more information please read the alliance’s

 Accelerating Research for a Treatment for Motor Neurone Disease briefing.

You can also read a copy of the letter we have sent to Government ministers asking for a meeting.

Are you in?

As soon as the campaign launches, we’ll share our ideas for how you can support our call for more funding for MND research.

This will include:

• social media action, including an exciting video to share from Doddie Weir
• a petition to sign
• how to contact your local MP when the time is right.

In the meantime, if you have any questions or ideas for the campaign, please contact us.