Who are we?

We are but just 4 of those living with Motor Neurone disease (MND) here in the UK in 2023. There were 5 of us, but sadly we lost our friend and campaigner, Chris Johnson in April 2023. You can read about Chris here and we will always retain his special page below. He is not gone, he is always with us. RIP Chris.

There are about 5000 of us, of all ages and from all walks of life living with this terminal disease diagnosis at any one time. MND currently has no effective treatment. Sadly, about 2000 of us will die every year without fail and around 1500 are added to our numbers. The average life expectancy after diagnosis is just 2 to 3 years.

Click on our mugshots to find out more about us!

Lee Millard
David Setters
Emma Moss
Nicola Waters
Chris Johnson QPM (1967 – 2023)

We are an informal group. While putting together a more formal entity might be useful, we simply don’t have time for formalities for obvious reasons. We want to do as much as we can, while we can, to help accelerate research into MND so that meaningful treatments can be found in the shortest possible time..

We are also involved in campaigning to improve standards of care, access to benefits/financial assistance and access to technology/equipment which will improve the quality of life of those living with MND and their carers.

The principal aim for us at the moment, however, is to get government to make a game changing investment in targeted MND research in order to maintain the great progress that our world leading researchers have made in the last few years.

Our guiding principle is to engage constructively with all of those that can help make a difference – the charities, researchers, health professionals, politicians and advisers and, of course, our fellow patients and their friends and families.

With respect to this latter group, we have an excellent network, but suffice to say that, as we are individuals with our own lives to live, our “bandwidth” can sometimes be limited.

Nevertheless, we try to take in as many views as we can. It is likely that we will not be able to agree all of the time about how to get things done, but we all share the same ultimate target of “a world free from MND”.

As best we can, we are trying to represent the patient voice. While we are hugely supportive of the magnificent work of our charities and researchers, we believe that sometimes our voice will need to convey a different emphasis. Our own experience tells us that patients, especially those with a progressive, terminal disease, can say things to policymakers in a more direct (but always courteous and constructive) manner.

We hope more of you will join us to show that we are #patientsunited2endMND