Motor Neurone Disease Association
   HOME

TheInfoList



OR:

The Motor Neurone Disease Association (MND Association) focuses on improving access to care, research and campaigning for those people living with or affected by
motor neurone disease Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND) or Lou Gehrig's disease, is a neurodegenerative disease that results in the progressive loss of motor neurons that control voluntary muscles. ALS is the most comm ...
(MND) in
England England is a country that is part of the United Kingdom. It shares land borders with Wales to its west and Scotland to its north. The Irish Sea lies northwest and the Celtic Sea to the southwest. It is separated from continental Europe b ...
,
Wales Wales ( cy, Cymru ) is a Countries of the United Kingdom, country that is part of the United Kingdom. It is bordered by England to the Wales–England border, east, the Irish Sea to the north and west, the Celtic Sea to the south west and the ...
and
Northern Ireland Northern Ireland ( ga, Tuaisceart Éireann ; sco, label= Ulster-Scots, Norlin Airlann) is a part of the United Kingdom, situated in the north-east of the island of Ireland, that is variously described as a country, province or region. Nort ...
. MND is also known as
amyotrophic lateral sclerosis Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND) or Lou Gehrig's disease, is a neurodegenerative disease that results in the progressive loss of motor neurons that control voluntary muscles. ALS is the most comm ...
(ALS) or, in the United States, Lou Gehrig's disease. The Association's chief executive is Sally Light and its president is neuroscientist Sir Colin Blakemore. The Royal Patron of the association is
The Princess Royal Princess Royal is a style customarily (but not automatically) awarded by a British monarch to their eldest daughter. Although purely honorary, it is the highest honour that may be given to a female member of the royal family. There have been sev ...
. The patrons of the Association are former English cricketer and current ICC official Chris Broad; entrepreneur and philanthropist Joel Cadbury, actor
Benedict Cumberbatch Benedict Timothy Carlton Cumberbatch (born 19 July 1976) is an English actor. Known for his work on screen and stage, he has received various accolades, including a British Academy Television Award, a Primetime Emmy Award and a Laurence O ...
CBE; palliative medicine consultant and parliamentarian
Baroness Finlay of Llandaff Baron is a rank of nobility or title of honour, often hereditary, in various European countries, either current or historical. The female equivalent is baroness. Typically, the title denotes an aristocrat who ranks higher than a lord or knigh ...
; neuroscientist, broadcaster, author and parliamentarian
Baroness Greenfield Baron is a rank of nobility or title of honour, often hereditary, in various European countries, either current or historical. The female equivalent is baroness. Typically, the title denotes an aristocrat who ranks higher than a lord or knig ...
CBE; TV presenter
Charlotte Hawkins Charlotte Mary Hawkins (born 16 May 1975) is an English television and radio presenter, newsreader and journalist. Hawkins joined ITV's ''Meridian Tonight'' in 2003, hosting its main news programme, leaving in 2006 to become co-presenter of ...
; entrepreneur and philanthropist Jamie Niven; former land-speed record holder and entrepreneur Richard Noble; OBE actor
Eddie Redmayne Edward John David Redmayne (; born 6 January 1982) is an English actor. Known for his roles in biopics and blockbusters, he has received various accolades, including an Academy Award, a Tony Award, a BAFTA Award, and two Olivier Awards. He ...
and OBE and TV/radio presenter
Jeremy Vine Jeremy Guy Vine (born 17 May 1965) is an English television and radio personality, presenter, broadcaster and journalist. He is best known as the host of his BBC Radio 2 lunchtime programme which presents news, views, interviews with live guest ...
. The Association had previously been supported by the neurologist and four-minute-mile record breaker
Sir Roger Bannister Sir Roger Gilbert Bannister (23 March 1929 – 3 March 2018) was an English neurologist and middle-distance athlete who ran the first sub- 4-minute mile. At the 1952 Olympics in Helsinki, Bannister set a British record in the 1500 metres an ...
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 ambassadors of the MND Association are actor Joss Ackland OBE; actress
Gina Bellman Gina Bellman (born 1966) is a New Zealand-born British actress best known for her performances as grifter Sophie Devereaux on the 2008-12 TNT television series '' Leverage'' and in the revival '' Leverage: Redemption'' when the series moved to ...
; actor
Taron Egerton Taron Egerton ( ; born 10 November 1989) is a Welsh actor. He is the recipient of a Golden Globe Award, and has received nominations for a Grammy Award and two British Academy Film Awards. Born in Birkenhead, England, Egerton began acting at a ...
; comedian and TV presenter
Olivia Lee Olivia Lee is a British comedian, actress and writer. Early life Lee is from a Jewish family. She studied acting at the Central School of Speech and Drama. Career Lee landed a presenting job alongside Simon Amstell on Channel 4's ''T4''. She l ...
and TV presenter
Natalie Pinkham Natalie Jane Pinkham (born 20 September 1977) is a British television presenter and Formula One pit lane reporter for Sky Sports F1, having held the same post for BBC Radio 5 Live in 2011. She is also known for hosting '' Police Interceptors Spe ...
. 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.


Activities


Research

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 Health and Social Care (often abbreviated to ''HSC'' or ''H&SC'') is a term that relates to services that are available from health and social care providers in the UK. This is a generic term used to refer to the whole of the healthcare provision ...
professionals to present and debate innovations in their fields. The MND Association funds research that includes animal testing.


Care and information

* Provide information to patients and carers * Provide care through a network of branches and regional care advisers


Fundraising

* 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 th
MND Charter
an
NICE guidelines for MND.
* Undertaking awareness activities across the year using media and PR opportunities. In 2019, the Association's 40th year this included a
art exhibition at the OXO gallery
* Sharing information, informal advice and expertise via their podcast
''MND Matters''
(launched in March 2021).


References

{{Authority control 1979 establishments in the United Kingdom Health charities in the United Kingdom Motor neuron diseases Organisations based in Northamptonshire Science and technology in Northamptonshire Scientific organizations established in 1979 Amyotrophic lateral sclerosis