Motor Neurone Disease Association
|Founded||6 October 1979|
|Registration no.||England: 294354|
|Focus||Motor Neurone Disease, health policy|
|England, Wales and Northern Ireland|
The Motor Neurone Disease Association (MND Association) is a British charity, operating in England, Wales and Northern Ireland, established in 1979 by a group of volunteers to coordinate care, support, and research for people affected by amyotrophic lateral sclerosis, which is a form of motor neurone disease (MND) (also known as Charcot disease, ALS or, in the United States, Lou Gehrig's disease).
The patrons of the Association are former English cricketer and current ICC official Chris Broad; entrepreneur and philanthropist Joel Cadbury, actor Benedict Cumberbatch CBE; palliative medicine consultant and parliamentarian Baroness Finlay of Llandaff; neuroscientist, broadcaster, author and parliamentarian Baroness Greenfield CBE; TV presenter Charlotte Hawkins; entrepreneur and philanthropist Jamie Niven; former land-speed record holder and entrepreneur Richard Noble; OBE actor Eddie Redmayne and OBE and TV/radio presenter Jeremy Vine.
The Association had previously been supported by the neurologist and four-minute-mile record breaker Sir Roger Bannister and cosmologist and theoretical physicist Professor Stephen Hawking CH CBE (who had lived with MND for many years) until their deaths in March 2018.
The association is the only national charity in England, Wales and Northern Ireland that funds and promotes global research into the disease and provides support for people affected by Motor Neurone Disease. It is a membership organisation with over 9,000 members forming a national and local network that provides information and support alongside fighting for improved services. It has over 7,000 active volunteers in England, Wales and Northern Ireland and around 170 paid staff, whose specialist skills and knowledge are dedicated to improving the lives of people affected by MND.
Further information can be found on their website as well as further key facts and information
A world free from MND
Improve care and support for people with MND, their families and carers.
Fund and promote research that leads to new understanding and treatments, and brings us closer to a cure for MND.
Campaign and raise awareness so the needs of people with MND and everyone who cares for them are recognised and addressed by wider society.
The Motor Neurone Disease Association funds and promotes research to understand what causes MND, how to diagnose it and, most importantly, how to effectively treat it so that it no longer devastates lives. It does this by:
- Funding research
- Coordinating research through conferences and symposia
The MND Association organises the International Symposium on ALS/MND, an annual event which brings together leading international researchers and health and social care professionals to present and debate innovations in their fields.
Care and information
- Provide information to patients and carers
- Provide care through a network of branches and regional care advisers
- Fundraising and income generating activities
- The association has 89 volunteer branches and groups across England, Wales and Northern Ireland, that assist with regional fundraising activities
- The association benefits from legacies and also tribute funds, which are left in the memory of people affected by the disease.
Awareness and campaigns
The association has a campaigns network that helps shape a better future for people with neurological conditions such as MND. It does this by:
- Lobbying government
- Raising awareness of the condition and encouraging adoption of best practice such as the MND Charter and NICE guidelines for MND.
- Holding an Awareness month every June.
A team from Hampshire Scout Expeditions are bidding to reach the South Pole in 2018, being the first Scout group to ski from the coast of Antarctica to the South Pole and back again, a total distance of 1400miles. The team will raise awareness of MNDA during their expedition and training.
- Homepage for the Motor Neurone Disease Association
- Facebook page for the Motor Neurone Disease Association
- Twitter account of the Motor Neurone Disease Association
- International Alliance of ALS/MND Associations
- MND Scotland, an independent charity registered in Scotland, and the only non-research charity working in Scotland for those with MND
- "MND Association website".
- "MND Association Website".
- "Press Office - Hawking Benedict Cumberbatch". BBC.co.uk. 2014-09-24. Retrieved 2015-05-20.
- "Models of MND". MNDassociation.org. 2015-05-16. Retrieved 2015-05-20.
- "Health Charities and Animal Testing". Animalaid.org.uk. Retrieved 2015-05-20.
- "Key Messages" (PDF).