Motor Neurone Disease Association (MND)Working to help people with MND
What is MND?
Motor Neurone Disease (MND) is a progressive neurodegenerative disease that attacks the upper and lower motor neurones. These are nerve cells along which the brain sends instructions, in the form of electrical impulses, to the muscles. Degeneration of the motor neurones leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing.
Can you tell me about the MND Association?
The Motor Neurone Disease (MND) Association was established in 1979 by a group of volunteers who wanted to co-ordinate support, guidance and advice for people affected by the illness. It is the only national charity in England,Wales and Northern Ireland working to help people with MND secure the care and support they need, while also fundraising and promoting global research into the disease.
The Association offers a wide range of services to people affected by MND, including:
● MND Connect: a national information, advice and support service on all aspects of MND (08457 626262)
● Nineteen Care Centres country-wide that provide co-ordinated care under one roof for people with MND
● A free Equipment Loan Service, including lightwriters to aid communication
● Limited financial support
● A network of Regional Care Development Advisers (RCDAs) who work with Health & Social Care Professionals to ensure effective support for people living with MND
● Education, advice and support for Health and Social Care Professionals
● A confidential emotional support and information service to people affected by MND through the provision of over 350 trained Association Visitors (AVs)
● A network of more than 90 Branches and Groups run by volunteers, raising money and providing support at a local level.
In 1998 the Association set out its Standards of Care that it expects the statutory services to deliver for people with MND. The standards were developed through feedback we received from people with MND and their carers, about their needs.
Some 33 years after our foundation we are even more aware of the work that still needs to be done to ensure the voice of people with MND is heard.
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