A significant step forward for the United2EndMND campaign

Today’s announcement of a £4.25m investment into MND research marks an important partnership between the UK’s leading neuroscientists, charities and the Government’s research funding councils in the fight to find effective treatments.

The intention is that the £50m wholly new funding pledged by the Government in November 2021 will be accessed in the same way. LifeArc, a medical research charity with expertise in translational research and the development of treatments, is central to this partnership. Most importantly, the announcement firmly paves the way for the creation of a national MND Research Institute focussed on the discovery of new treatments. This will bring together all of our leading scientists and allow for more efficient access to government funds through simplified government grant application processes.

You may be aware from the BBC and national press that our lead researchers have been campaigning alongside patients and charities, on the United2endMND campaign, to satisfactorily access the £50m mission funds. As we have stated on social media, and in the press, the Government has been insisting on up to several hundred applications to facilitate access to the funds. This would have been untenable and led to vital research being delayed, resulting in treatments taking decades to be developed and not years.

After months of discussions, a way forward has surfaced which, although not the one we envisioned, means that our world leading scientists can set to work on their co-ordinated plan. While they will now need to submit 2 to 3 applications typically per year, the assistance of LifeArc and government agencies will greatly simplify these processes. The extent of this simplification cannot be overstated. It is significant. It will enable the setting up of the Institute and the acceleration of research towards the first meaningful treatments, and allow easier access to trials for patients.

While this is not the perfect outcome, it does allow the vital work to begin. As patients, alongside charities and researchers, we will keep a close eye on government to make sure it delivers on its promise.

We believe the model we have proposed should be used to streamline the grant application process for translational research projects into many other conditions. Rather than holding such projects back with bureaucratic “red tape”, this is the way we would expect a prospective scientific superpower with global ambitions to move forward.

We are, however, assured by our scientists that the modified processes they have negotiated will enable them to draw down significant amounts of the promised £50 million government funding to kickstart their work and, at the same time, attract further investment from industry and charities. They want to get started ASAP and we would not want to detain them any longer with pressing for further change in government processes, at this time.

We believe that the establishment of the MND Research Institute with its own identity will provide momentum and a focus for further funding from government, charities and industry. Over the next 6 months, the delivery group for the Institute, including patients, researchers and charities, will be working with government to further streamline the processes to begin to access the pledged £50m.

There is nothing like this Institute anywhere in the world for MND. Our researchers and charities are trailblazers backed by a strong patient voice and leadership. We are confident this is the best way forward in our fight for treatments.

We should also add that our leading neuroscientists have dedicated an enormous amount of time and effort to our campaign whilst, at the same time, continuing with their world class research and their day jobs as clinicians to the MND community. We thank them all.

Patientsunited2endMND