

A new research institute in London launched to accelerate the hunt for a cure for motor neuron disease (MND, better known as ALS).
The UK Motor Neuron Disease Research Institute, or UK MND RI, was founded in June 2022 with the goal of discovering novel medicines that will eventually make MND a curable disorder.
The Rt Hon Stephen Barclay MP, Secretary of State for Health and Social Care, visited the IoPPN earlier this year to observe how the government’s £50 million pledge to better understand and treat motor neuron disease would be used.
People with MND are at the heart of the Institute, which brings together a virtual network of MND labs, clinical centers, and researchers from throughout the UK to conduct world-class MND research. Professor Ammar Al-Chalabi of King’s College London and Professor Chris McDermott of the University of Sheffield are co-directors.
MND is a neurodegenerative illness that affects brain and spinal cord nerve cells. People gradually lose their ability to move freely and require extensive care. One-third of motor neuron disease patients die within a year after diagnosis, and more than half die within two years. Although it appears to be a rare disease, MND affects one in every 300 people in the UK; six people are diagnosed with motor neuron disease every day, and six people die from it.
There are currently no treatments to cure motor neuron disease, and the UK has only one licensed medicine for MND, which has only minor effects. As a result, the Institute’s research into finding a cure is critical.
As part of the Institute, the team of doctors, clinicians, scientists, and people with MND, as well as charities and other sponsors, will collaborate more closely than ever before to accelerate drug discovery and development. The team’s goal is to take fresh scientific discoveries, ‘translate’ them into novel treatment techniques, and then evaluate those prospective medicines in clinical trials.
“MND is devastating, and we desperately need to find meaningful treatments as fast as possible. This virtual MND Research Institute means MND 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.”- Professor Ammar Al-Chalabi, co-director of the new UK MND Research Institute and Professor of Neurology and Complex Disease Genetics at King’s College London
Professor Christopher McDermott, co-director of the new UK MND 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 motor neuron disease. 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 motor neuron disease in its tracks.
“Today’s launch is so welcome,” said David Setters, who lives with motor neuron disease and was a part of the #United2EndMND campaign. Patients want to see an Institute brought together by collaboration to hasten the arrival of therapies. Many people have worked tirelessly to make this possible. I am hopeful that this will serve as a springboard to a brighter future for patients and everyone affected by MND. We hope it shifts the debate between neurologists and patients away from palliative care and toward accessible treatments and, eventually, a cure.”
The MND Association, MND Scotland, My Name’5 Doddie Foundation, medical research charity LifeArc, the National Institute of Health and Care Research (NIHR), and the Medical Research Council (MRC) support peer-reviewed research programs at the institute.
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