Motor Neurone Disease Awareness Day 2024

Motor Neurone Disease (MND) Awareness Day is dedicated to raising awareness about a devastating neurological condition that affects thousands of individuals worldwide. Characterised by the progressive degeneration of motor neurons, MND leads to muscle weakness, loss of mobility, and difficulties with speech, swallowing, communicating and breathing.

MND Awareness Day is an opportunity to honour the strength and resilience of those battling MND, celebrate advancements in research. Through events, campaigns, and personal stories, MND Awareness Day shines a light on the challenges faced by patients and their families, and inspire collective action towards finding a cure. At Devices for Dignity (D4D) the NIHR Health Technology Research Centre (HRC) in long term conditions, we have been working to help people living with MND with incredible contributions from our Long Term Neurological Condition theme leads, Professor Chris McDermott and Dr Dan Blackburn.

Head Up Collar

D4D collaborated with the University of Sheffield, Sheffield Hallam University, Sheffield Teaching Hospitals, Barnsley Hospital, the Motor Neurone Disease Association (MNDA), The NIHR Sheffield Biomedical Research Centre (BRC) and industry partners TalarMade, in making significant strides in improving the quality of life for individuals with motor neurone disease (MND) through the development of the Head Up Collar. MND leads to progressive muscle weakness, including the muscles involved in neck movement, making it difficult for patients to communicate, breathe and hold their heads up. This can result in discomfort, reduced mobility, and social isolation.

This innovative device offers a customized support solution, designed to be both functional and comfortable, enhancing the daily lives of MND patients. Unlike traditional neck braces, the Head Up Collar is made from lightweight materials and tailored to fit individual needs, ensuring optimal support without compromising on comfort.

The development process involved extensive feedback from MND patients, caregivers, and clinicians to ensure the collar addressed the specific challenges faced by users. By focusing on user-centred design and leveraging cutting-edge technology, we helped to deliver a product that not only aids in physical support but also boosts confidence and independence for those affected by MND. In 2023, the HeadUp Collar also won the global made by patients award for its outstanding patient-centred approach to developing this device (Sheffield-Developed HeadUp Collar Wins Global Award for Patient Driven Research – NIHR Devices 4 Dignity MIC ( Global sales are currently over 5000 and used in most NHS trusts in the UK with agreed royalties raising over £80,000 for collaborating partners.