Association helps fund new £4.25 million grant to kick-start UK-wide collaborative research effort

Collaboration partnersA group of charities and government research organisations has awarded £4.25 million to motor neurone disease (MND) experts at six UK universities to kick start efforts to end MND.

This new ‘MND Collaborative Partnership’ brings together people living with MND, charities MND Association, LifeArc, MND Scotland and My Name’5 Doddie Foundation, government bodies Medical Research Council (MRC) and National Institute for Health and Care Research (NIHR), and researchers from King’s College London, University of Sheffield, University of Liverpool, University College London, University of Oxford and University of Edinburgh. The partnership team will work together to find solutions to address problems currently hindering MND research and aims to discover meaningful MND treatments within years rather than decades.

The UK-wide Partnership was formed in 2021 to co-ordinate and pool funding for research into MND to speed up progress and help research to move towards the clinic, ultimately reaching patients faster.

Thanks to generous donations from supporters to the Extra Mile Challenge, completed by Association patron Kevin Sinfield in November 2021, the MND Association has contributed £1 million to the £4.25 million partnership.

It is hoped the Partnership will provide the launchpad for further collaborative investments into MND research, including the £50 million committed by the Government in November 2021 following the United to End MND campaign.

Members of the new Partnership will work together and pool their expertise over three years to:

  • co-ordinate research effort and deliver maximum impact for people with MND
  • develop better tests to measure MND progression and allow doctors to compare different drugs
  • improve MND registers so doctors can collect detailed, high-quality data about the disease, to understand which patients are most likely to respond to a particular drug and therefore recommend 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 theories about the disease and a pipeline of potential therapeutic agents that could ultimately be used as MND treatments.

They will also launch a major new study involving 1,000 people with MND from across the UK to better understand disease progression and how people respond to new and existing treatments.

Dr Brian Dickie, Director of Research Development at the MND Association said:

“Collaboration is crucial to success. We are delighted that leading scientific minds across the UK have the opportunity to combine their expertise, supported by the joined-up funding from multiple organisations, in the common aim of understanding, treating and ultimately defeating this devastating disease. Donations to Kevin Sinfield’s latest challenge for the MND Association have directly contributed to this exciting collaboration, highlighting the impact our incredible supporters have on what we can achieve. This partnership is an important foundation for further investment into MND research in the future.”

Dr Catriona Crombie of LifeArc, the charity which has co-ordinated efforts from all funders to deliver this landmark Partnership, said:

“Over recent years, scientists have made great progress in MND, and this has opened up several promising avenues that could ultimately make a difference to patients. But there are some barriers hindering progress. For the first time, the MND community – that’s patients, funders, scientists and doctors – have come together to work out the problems and plan a way forward. As funders we are really excited at what this exceptional group of people could achieve for those affected with MND.”

David Setters, who is living with MND and has been involved in shaping the Partnership, said:

“We welcome this collaboration, which paves the way for the £50 million government investment promised in November 2021, focused on making the first meaningful treatments for MND available within years, instead of decades. It brings real hope to those of us living with MND to see our leading neuroscientists and charities coming together in this way. The prospect of easier access to clinical trials and the most promising therapies being fast-tracked gives us a much-needed boost and brings a real sense of purpose to the community.”

Health and Social Care Secretary Sajid Javid said:

“Motor neurone disease has a devastating impact on those who are diagnosed, their families and loved ones – but there is hope. This new Partnership is a highly ambitious approach which will drive progress in MND research and, backed by £1 million of government funding, will bring the MND research community together to work on speeding up the development of new treatments. The collaboration across government, charities, researchers, industry, and people with MND and their families will take us one step closer to one day achieving a world free from MND.”

Funding for the MND Collaborative Partnership research grant totals £4.25 million and contributions are as follows:

  • MND Association (£1 million)
  • LifeArc (£1 million)
  • My Name’5 Doddie Foundation (£1 million)
  • MND Scotland (£250,000)
  • Medical Research Council (MRC) (£500,000)
  • National Institute for Health and Care Research (NIHR) (£500,000).

Read more about the MND Collaborative Partnership

MND Association commits extra £5 million to MND research

The extraordinary efforts of our supporters in 2021 has enabled the MND Association to commit an extra £5 million into translational research. As highlighted in the Association’s Annual Report, this surge of support led to 2021 becoming a record year for income which has allowed us to bring forward projects in key areas. Of this surplus, the Association has set aside these funds to invest in translational research, helping to bridge the gap between discoveries made in laboratories and the development of potential new treatments.

Dr Brian Dickie, Director of Research Development at the MND Association said:

“In recent years, scientists have made huge advances in understanding the disease and there is increasing confidence within the research community that we have reached a stage where this knowledge can be turned into treatments. Our extra £5 million research commitment and relentless pursuit of the promised £50 million Government investment reflect our determination to accelerate the search for new therapies and, ultimately, a cure for MND. People with MND do not have time to wait.”

As with our contribution to the MND Collaborative Partnership, we will seek to ensure that these new funds are used in a similar way that complements the anticipated investment from Government and other funders. More updates on the progress of this investment to MND research will be available later this year.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262