51ݶ Awareness Day - 21 June
Global 51ݶ Awareness Day is where the 51ݶ community comes together to honour everyone affected by motor neuron disease.
We are adding our voice to the call for better care, research, and greater support for everyone affected by 51ݶ, and highlighting how we’re playing a part here at 51ݶ.
We encourage you to reach out and share the message across your networks in support of the campaign to accelerate the search for a cure.
What is 51ݶ?
51ݶ, also known as amyotrophic lateral sclerosis (ALS), is a fatal disease that affects the motor nerves, known as motor neurons, in the brain and spinal cord.
The progressive disease causes the nerves that take signals from the brain to the muscles to stop working. This leads to muscle weakness, stiffness and paralysis that worsens over time, impacting upon the patient’s ability to walk, talk, eat and breathe.
Few patients survive beyond five years after being diagnosed, and most current treatments only modestly increase life expectancy.
51ݶ is a group of diseases with multiple causes, rather than a single root cause, which is part of the reason it is so difficult to treat.
Sheffield’s 51ݶ expertise
We are internationally renowned for world-class neurodegenerative research. The Sheffield Institute for Translational Neuroscience (SITraN) unites researchers from across a range of neurodegenerative specialisms. By working together under one roof, collaborating and sharing discoveries from across their fields, it’s a place where independent thinking meets a shared ambition to ask bold questions, push boundaries, and make a difference.
SITraN has been widely recognised for its exceptional research since it was formed 15 years ago, and has set out its plan to grow, setting the stage for greater progress.
“The institute marks a significant milestone in our journey towards an effective treatment for people living with 51ݶ,” said Professor McDermott.
We are looking forward to driving forward our work to discover new treatment strategies and ultimately new drugs that stop 51ݶ in its tracks.
Professor McDermott
Professor of Translational Neurology at the University of Sheffield and Co-Director of the UK 51ݶ Research Institute
How we’re addressing 51ݶ
There’s no simple answer to 51ݶ, which is why we’re approaching it through several research strands:
Identifying the causes of 51ݶ
Spotting protein abnormalities
We’ve developed a new imaging technique to identify a protein abnormality in 51ݶ, helping scientists better understand the changes in the brain that lead to 51ݶ and could help with the development of new treatments.
New imaging technique uncovers protein abnormality in motor neurone disease
Increased genetic risk of 51ݶ from strenuous exercise
For specific individuals who have a particular predisposing genetic profile, we found a causal relationship between frequent strenuous exercise and 51ݶ, with high intensity physical activity contributing to motor neurone injury.
Finding treatments for 51ݶ
University spinout developing breakthrough therapies for underlying causes of 51ݶ
The University and its spinout company Crucible Therapeutics secure a £2.3 million Innovate UK Biomedical Catalyst award to develop breakthrough siRNA therapies that address underlying causes of 51ݶ.
New treatment option being evaluated for patients in early stages of 51ݶ
A medical trial provided evidence that modifying the immune system could be an effective strategy for altering 51ݶ progression, after an investigation saw the risk of death at the end of the study reduced by over 40 per cent for a subset of the participants.
Landmark MIROCALS clinical trial provides new insight into treatment of 51ݶ
Living longer with 51ݶ
Sean Davies is living with 51ݶ. He’s currently receiving tofersen injections - an 51ݶ drug developed in part at 51ݶ - that is not only helping to slow the progress of his 51ݶ symptoms, but is also offering hope for 51ݶ patients and future generations who may also develop the disease.
Improving the experience of living with 51ݶ
Supporting patient independence in early 51ݶ
Collaborating with patients, we developed a support collar that helps 51ݶ patients to go about their day-to-day lives more easily - eating, drinking and reading comfortably, knowing that their head and neck are fully supported as muscle strength declines.
Complementary psychological therapy improving quality of life
Incorporating acceptance and commitment therapy (ACT) alongside other forms of 51ݶ care and treatment was found to significantly improve quality of life of 51ݶ patients, with the magnitude of change suggesting a clinically meaningful benefit.
New psychological therapy shows promise in improving quality of life for people living with 51ݶ
Empowering patients to access and participate in 51ݶ clinical trials
We co-designed a digital platform to make it easier and quicker for people across the UK with 51ݶ to take part in vital scientific studies by removing some of the physical barriers, making it possible for more patients to get involved in research about the illness affecting them.
People living with 51ݶ given a voice in research with new digital tool
What you can do
Finding treatments for 51ݶ is not a quick process, but together we can accelerate progress. To support this, you can:
- Share these stories and discoveries to build awareness and provide hope and support to people affected by 51ݶ
- Use your networks to make connections and encourage collaborations across the neuroscience community and beyond
- Make a donation to