In November 2021, the UK government pledged to release £50m for Motor Neuron Disease (MND) research over 5 years. This came after the initial commitment of £4.25m in June 2022 from a group of charities and government research organisations. Recently, in December 2022, the release of the first £29.5m has been announced, with the amount of red tape required for access greatly reduced.
These commitments responded to a two-year campaign by the United to End MND Coalition with support from the BBC and Sunday Express. The coalition is led by people with MND, neurologists, the MND Association, MND Scotland and My Name'5 Doddie Foundation.
Regarding the announcement, Professor Ammar Al Chalabi, Professor of Neurology and Complex Disease Genetics at King’s College London said, “This morning’s announcement by the Health Secretary is the early Christmas gift that the MND research community have been waiting for. This funding represents an invaluable opportunity to drive forward research that will have a real impact on those living with MND, and I welcome it wholeheartedly.”
The funding is awarded to the national collaboration, badged under the name UK MND Research Institute. The Institute officially launched on 1 January 2023 with King's College London, collaborating with The University of Sheffield, The University of Liverpool, The University of Edinburgh, The University of Oxford, and University College London. The partnership include patient activists and charities, the MND Association, MND Scotland, My Name’5 Doddie Foundation and LifeArc.
The partnership will work to:
- Coordinate research effort and deliver maximum impact for people with MND
- Develop better tests to measure MND progression and that allow doctors to comparedifferent drugs
- Improve MND registers so doctors can collect detailed, high-quality data about the disease,and understand which patients are most likely to respond to a particular drug and thereforerecommend them for the trials most likely to benefit them
- Support people to take part in clinical trials more easily
- Develop more robust lab tests and models of disease to enable scientists to test theoriesabout the disease and a pipeline of potential therapeutic agents that could ultimately beused as MND treatments