A Statement

This is a statement from people living with MND. 

We are hopeful that discussions taking place today involving leading scientists and senior government advisers will open up a way to release the £50 million funding promised by the Prime Minister in November last year for a mission to find effective treatments for MND and enable the immediate rollout of the detailed and co-ordinated scientific research plan across the UK.

This meeting is a follow-up to our April 26 meeting with Gillian Keegan, Minister for Care and her staff.

Having raised the hopes of people suffering with one of the most devastating diseases, it would be an act of remarkable cruelty to dash those hopes at this stage. MND patients can see a way forward, led by the scientific community, and we are not going back to a position of accepting the status quo. We have found our voice and we will use it in the strongest ways until our scientists have the resources they need for their innovative mission to find treatments.

MND is unique in that there are no effective treatments and it has a near 100% fatality rate. It is so traumatic to endure that it is the most common reason people seek assisted death. We now have an opportunity to change this and we must grasp it. We trust the world-leading scientists here in the UK and we demand that the promised funds are released efficiently and promptly to them for their mission to end MND.

Patientsunited2endMND – 10/5/2022

Update – 1st May 2022

Report of meeting with Care Minister Gillian Keegan

26th April

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Single Application Letter from researchers

Letter to Minister ahead of Meeting on 26th April 2022

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The best road to a cure – the importance of following the science

The best road to a cure – the importance of following the science

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Threshold Funding

Bringing hope to MND patients – the changing status of research and how threshold funding will make a difference

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