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A new research institute which will accelerate the search for a cure for motor neuron disease (51��ݶ�) has been launched today (3 November 2023).    

The new UK Motor Neuron Disease Research Institute, or UK 51��ݶ� RI, aims to discover new treatments that could ultimately mean 51��ݶ� becomes a curable condition.

People with 51��ݶ� are at the core of the Institute, which brings together a virtual network of 51��ݶ� labs, clinical centres and researchers carrying out world leading 51��ݶ� research across the UK.

The Institute is co-directed by 51��ݶ� clinician researchers Professor Chris McDermott from the University of Sheffield and Professor Ammar Al-Chalabi at King’s College London. 

51��ݶ� is a neurodegenerative disease affecting the nerve cells in the brain and spinal cord. People progressively lose voluntary movement and need complex care. Around one third of people with 51��ݶ� die within a year of diagnosis, and more than half within two years. Although it appears rare, 51��ݶ� will affect one in 300 people in the UK – every day six people are diagnosed and six people die with 51��ݶ� in the UK.

There are currently no treatments to cure 51��ݶ�, and just one licensed drug for 51��ݶ� in the UK, which has only modest effects. As a result, the Institute’s research to hunt for a cure is vital.

As part of the Institute, the team of doctors, clinicians, scientists and people with 51��ݶ�, together with charities and other funders, will work together in a more coordinated way than ever before, to speed up drug discovery and drug development. 

The team wants to take new scientific discoveries, translate the knowledge into new approaches to treatment, and then test those potential treatments in clinical trials.

Professor Christopher McDermott, co-director of the new UK 51��ݶ� Research Institute and Professor of Translational Neurology at the University of Sheffield, said: "We’re delighted to be launching the Institute today – it marks a significant milestone in our journey towards an effective treatment for people living with 51��ݶ�. 

“The Institute partnership has had early success in securing government funding to undertake a new experimental medicine study to rapidly screen drugs at a pace and scale not seen before. 

“We are looking forward to driving forward our work to discover new treatment strategies and ultimately new drugs that stop 51��ݶ� in its tracks.”

Professor Ammar Al-Chalabi, co-director of the new UK 51��ݶ� Research Institute and Professor of Neurology and Complex Disease Genetics at King’s College London said: "51��ݶ� is devastating, and we desperately need to find meaningful treatments as fast as possible.

“This virtual 51��ݶ� Research Institute means 51��ݶ� researchers across the UK and beyond can work together as a team, joining up lab science with clinical practice to advance research more quickly towards an effective therapy.”   

David Setters, who is living with 51��ݶ�, was part of the #United2End51��ݶ� campaign. He said: “Today’s launch is so welcome. An Institute brought together by collaboration to accelerate the arrival of treatments is just what patients want to see.

“So many people have worked hard to make this happen. I am optimistic this will be the springboard to a better future, offering hope to patients and those affected by 51��ݶ�. We hope it will change the conversation between neurologists and patients from the current focus on palliative care to available treatments and, ultimately, a cure."

Peer-reviewed research programmes within the institute are funded by the 51��ݶ� Association, 51��ݶ� Scotland, My Name’5 Doddie Foundation, medical research charity LifeArc, the National Institute of Health and Care Research (NIHR) and Medical Research Council (MRC).

Institutions already involved in the Institute are University of Sheffield, King’s College London, University of Edinburgh, University of Liverpool, University College London and University of Oxford.