We are but just a few of those living with Motor Neurone Disease (MND) here in the UK. There were 5 of us initially, in 2020, but sadly we lost our dear friend, campaigner and one of our founding members, Chris Johnson, in April 2023. You can read all about Chris here and we will always retain his special page below. He is not gone, he is always with us. RIP and thank you Chris.

And very suddenly, we lost Susan Duffy in January 2024 who, supported by her sons Gerard and Martin, was an absolute inspiration in Northern Ireland. Gerard wrote a few words and you can read them here. We will, again, retain her page below. RIP and thank you Susan and Gerard.

In April 2024 we lost James Clarke and it just reminds us of how fragile life is. Thank you for all your support James. RIP. We will, again, retain his page below.

In January 2025 we lost Stephen Mallett. Thank you for all your support Stephen and the incredibly forensic work you did with the UK MND Research Institute setup and foundation. RIP. We will, again, retain his page below.

But, in reality, 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 in the UK. 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!

Importantly we believe in being science ‘led’ and will only campaign and advocate for both further research and treatment candidates when there is a strong scientific consensus. We see our value as simply bringing the patient voice behind that science. We can say things our scientists and charities can’t say!

We re always open to offers of help, and please don’t hesitate to contact us if you have any questions and thoughts. Perhaps you might join us?

In 2021, the #United2EndMND campaign led by The MND Association, MND Scotland, My Name is Doddie Foundation, patients and leading UK researchers was started. We called on the UK government to commit £50m of new investment at this critical juncture in MND Research worldwide to accelerate the search for treatments through the formation of a new strategic MND Research Institute.

We are an informal group. While putting together a more formal entity might be useful, we all 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.

However, our primary aim is to advocate for the UK government to make game changing and regular investments 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 ethic 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.