3 years on from the United2endmnd £50m UK government campaign

Yes it really has been 3 years. This weekend marks the anniversary that the campaign, for a wholly fresh UK government investment in a new dynamic concept called the UK MND Research Institute, was taken to Parliament.

Here is a summary of what happened, where we are now, and where we believe we should be going as a community.

First we have to reflect on the brutal and sad reality of our disease. The photograph below has become close to our hearts and was taken on September 21st 2021 just outside Downing Street. A group of people brought together by an ‘unwelcome visitor’ to our lives but making friendships that would last.

A number of the group are no longer with us, including one of our team’s founding members, Chris Johnson, and of course, in the centre, the legendary Rob Burrow. On the day fellow legend, Doddie Weir, was also supposed to join us, but he tested positive for covid on his journey to Parliament and had to turn back to Scotland. We have also lost Doddie since.

On the day we both presented a letter to the Prime Minister and met ministers and MPs to discuss the proposal.

2 months later we were delighted to hear that the government had agreed to our proposal.

Like so many things in life this event was only the start of the work, or as they say ‘now the real work begins!’ and it took roughly 2 years from that very day to the the formal launch of the Institute.

In these 2 years our brilliant researchers were not sitting idle – they were both intensively involved in high level governmental meetings in addition to the huge amount of technical work needed to form the Institute. And of course they all had day jobs as neurologists diagnosing and treating MND patients.

Their dedication is something that our community can all be both assured and justifiably proud of.

We know it may seem that progress runs at the speed of a slug, but we at united2endmnd were exposed to just some of the complexity of setting up such a beast. We hope we have managed to have reported it to the community in a way that has both kept you informed and motivated with hope. We all need hope.

We saw, amongst other challenges,

1. The vital need to validate scientific proposals with global experts (peer review).
2. That the UK government were not going to just ‘give out’ cash to an idea proposed by campaigning patients, albeit validated by UK MND research leaders.
3. The wheels of government slowing turning and how science is/was funded from budgets in various departments.

After the formal launch of the Institute in November 2023, the work continued.

The Institute got its own shinny website and the first major project started to take shape, EXPERTS-ALS.

You can read all about this globally unique project on the dedicated EXPERTS-ALS project website. It aims to ‘screen’ drugs in patients before committing to expensive and pivotal phase 3 trials. You might also like to read our behind the scenes post as well.

The latter end of 2023 and early 2024 saw a number of high profile drug trial failures in the USA (and beyond) reenforcing the need to improve pre-clinical research before running expensive trials in humans. Ideally we only want to be running trials with the greatest chance of success. This is one ambition of the Institute, and EXPERTS-ALS will attempt to provide some of that ‘filtering’ with its unique ‘screening’ protocol. It’s a high risk project, but has potentially huge rewards.

Narrowing the pipeline of potential drug/treatment candidates – Reducing time to both failure and success?

What next for United2endmnd?

We will continue to retain our focus on the Institute, and at least two other areas that we have defined in our “Changing the conversation” mantra. These are

1. Encouraging an approach to trials that allows for the maximum number of patients to take part along with better information and support to enable patients to decide what is best for them and
2. Campaigning on new treatments which have shown ‘proven’ significant effect in pivotal trials to be approved speedily. 
   

Finally we are but a small group, and we are nothing without the backing and support of the wider MND community in the UK.

Please contact us if you have any ideas, concerns etc.

We always welcome new ideas, and might you want to join our small informal team? There’s no membership fee!

#United2endmnd

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Footnote.

Read more about the campaign in our Brain journal article and you can find the complete detailed history of the campaign wthin the campaign documents. These provide a lot of background which you might find interesting.