United2EndMND – Status Update

Last week, our world was rocked to the core by the sudden passing of the legendary Doddie Weir. His battle with our disease was played out in full public glare, exposing the brutal nature of the neurodegenerative effects. He did so because he wanted and demanded change. And boy did he achieve! We will remember him fondly and his legacy (or more accurately legacies) will live on.

Doddie thank you. RIP

We would not be speaking out of turn to say that Doddie would have wanted the MND community to fight on, demand more change, raise awareness relentlessly and drive research to accelerate treatments. He certainly had his pedal to the metal throughout.

It feels timely to give an update from patients on the progression of the campaign and latest news.

First, let us remind ourselves of what the #United2endMND campaign was all about and what the £50m was/is intended to be used for. And, perhaps, crucially, what it is NOT for.

What did we want the £50m to be targeted at?

The graphic below, from our 2021 spending review submission essentially attempts to address the weakness in funding mechanisms for a disease that scientists have reached a good understanding of and wish to take from the lab and into patient trials. This is known as translational science, and is the acceleration our community needs.

Put simply, we wanted a new National Institute for MND Research focused 100% on translational science, a production line for discovery, increased availability trials and, ultimately, bringing treatments to patients. We want to change the conversation by being able to offer every patient, upon diagnosis, a place on a trial. This requires fundamental changes in the way research is funded by the UK government, moving from a piece meal approach to a strategic and coordinated scientific plan with guaranteed funding.

What did we NOT want the £50m for?

Research for care, general neurodegenerative research and some basic science MND research is not intended to be included in the Institute’s mission. Why? The institute is unashamedly focused on becoming a translational research factory bringing treatments to patients. However, care research is vitally important for our community. This research would continue to be funded via separate and stand alone applications to the traditional science UK Government research agencies, namely the NIHR and the MRC, and the charities.

What is the status of the new MND Institute?

It’s underway!

The first full business meeting of the leading researchers and wider MND research family was held last week to kick off the endeavour. On a cold late November day over 80 people gathered from all over the UK in London, including representatives from government, the leading MND charities, the translational specialist charity LifeArc and people living with MND. As described in our FAQs, the foundations are already underway with £4.25m of funding. The next projects for the scientific plan were also on the agenda.

Some unfortunate comments made by the Secretary of State for Health, Steve Barclay, 28/11/2022

There were some unfortunate comments made by Steve Barclay on a visit to the Royal Marsden Hospital last week in response to a question regarding the status of the £50m commitment. Our MND charities and we patients have written a rebuttal and also asked for a meeting with the Secretary of State to clarify. We continue to remain committed to work constructively with the government. In the past few days, we have been working to clarify elements of miscommunication within the government funding agencies.

Are there any issues the MND Community should be aware of?

A paradigm shift such as the #united2endmnd campaign for translational research will always continue to have bumps in the road. It’s a complex beast.

Following the historic November 2021 government commitment of £50m discussions on simplifying the application process continued until June 2022. We have documented the absolute need for a simple process, one that is non-burdensome and allows our researchers to get on with their speciality, science. In fact, it is central to the ethos and strategy of the new MND Institute that a coordinated and streamlined process be implemented. Existing application processes for government research funding are complicated, highly restricted financially and often limited to twice a year deadlines. Its not uncommon for a relatively small application to take over 18 months to complete! Combine this with maximum typical grant sizes of about £1m and you can get a feel for the red tape that would befall a large game changing initiative such as the MND institute. Our scientists could spend years just applying for that £50m!

In June 2022 a compromise was reached to vastly streamline the submissions. Now 6 months later, we patients have some concerns that the solution proposed may be suffering from teething problems, or worse still not be fully fit for purpose.

We are now focused on continuing to simplify the application process.

We will continue to update the community on a regular basis.

Thank you

PatientsUnited2EndMND.org