Building the National Institute for MND Research

Building the Institute

These are truly exciting and promising days in MND/ALS research and the search for a cure/treatments. Following the successful #united2endmnd campaign, the UK Government has released for early access, £30m of the £50m promised for investment in a coordinated, detailed scientific plan for translational MND research. This is excellent news.

Our scientists can now move on to rapidly building on the foundations of the

National Institute for MND Research

The institute has at the heart of its mission changing the conversation for our community by accelerating the progress towards truly effective treatments.

But what exactly is this Institute?

One thing it is NOT, is “bricks and mortar”. No, in the 21st century science and communications technology has created new ways of working that were unimaginable only 20 years ago.

Think of it as more of network of expertise and resources all working together with a single aim of driving treatments to patients…

It is a Virtual Institute

Comparable to a car factory designed to make reliable vehicles. In this case it has one purpose, to deliver, using standard processes, components and dedicated resources, candidate experimental treatments for MND.

Readers may have heard of the, rather unfortunately named, Valley of Death that appears to exist between the huge promises of modern day research and delivering actual tangible benefits to patients. For our disease, this is especially so, with the giant leaps in foundational science yet to realise a single, truly effective treatment. Translational research, is the name given to the means by which this valley can be bridged.

For more detail take a look at our 2021 UK Government spending review submission. A key element is that a change of approach is needed for a disease that scientists have reached a good understanding of and wish to take from the lab and into patient trials at an increased pace.

The following diagram from our Technical Overview of the Institute shows the envisaged impact of such a translational approach for our disease, bringing together patients, funders, pharma and researchers.

We want to change the conversation by being able to offer every MND patient, upon diagnosis, a place on a trial. This requires an integrated new approach by the research community and fundamental changes in the way research is funded by government, moving from a piecemeal approach to a strategic and coordinated scientific plan with guaranteed funding.

What did we NOT want the £50m for?

Research for care and general neurodegenerative 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, stand alone, applications to the existing government research funding agencies, the NIHR and the MRC, and the charities.

So what is the status of this new MND Institute?

It’s underway!

The first full business meeting of the leading researchers and wider MND research family was held in late November 2022 to kick off the endeavour. 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.

Soon there will be dedicated Institute Web Site and Social media presence.

Stay tuned for developments and don’t’ forget about our key documents pages and FAQs page. We are keeping these updated.