(Image: Jonathan Buckmaster)

A significant step forward for the United2EndMND campaign

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.