The national MND Association website has a wide range of guides, packs and publications. Includes information on MND research, financial aid/benefits available and treatments along with personal experiences and further support.
Support for daily living and managing symptoms to maintain the best possible quality of life by the MND Association. There is both an interactive and a standard guide, as well as the ability to order a printed version.
Liam Dwyer started Disabled4Disabled because all he seemed to do was research on what he needed when he was first diagnosed with MND. His website has many helpful links to various services and equipment available.
Carers hold families together, enabling loved ones to get the most out of life – whilst often being stretched to the limit themselves. So this is the organisation that provides support for and understanding the rights of carers.
The Sussex Motor Neurone Disease Care and Research Network commenced on 1 December 2016 with funding from the Motor Neurone Disease Association. The primary goal of the network is to improve support and care for people with Motor Neurone Disease (MND) living in Sussex.
The King’s MND Care and Research Centre was the first specialist centre for MND / ALS to have been established in the UK, and is a partnership between King’s College Hospital NHS Foundation Trust, which hosts the King’s Motor Nerve Clinic, and King’s College London, home to our world-class research group. The Centre is part-funded by the Motor Neurone Disease Association. Our aim is to find a cure for ALS, and improve quality of life for patients and their families.
Lane Fox outpatient clinic is situated at St Thomas’ Hospital and a satellite service is available at REMEO, East Surrey Hospital and they offer ongoing respiratory assessment for those diagnosed with MND.
St Barnabas House is a charity based in Worthing, West Sussex which provides palliative care and support to adults with life-limiting illnesses, both at the hospice and at home. They cover Worthing, Lancing, Shoreham, Littlehampton, Henfield, Steyning, Partridge Green and Storrington.
St Wilfreds Hospice is a charity based in Bosham near Chichester, West Sussex which provides palliative care and support to adults with life-limiting illnesses. Their catchment area runs between Emsworth to the west and Arundel to the east, south of the downs to the coast.
Motor Neurone Disease (MND) describes a group of diseases that affect the nerves (motor neurones) in the brain and spinal cord that tell your muscles what to do. With MND, messages from these nerves gradually stop reaching the muscles, leading them to weaken, stiffen and waste. Watch the short animation shown above for an overview about the disease. More information is available at the MNDA website >