MND Association

The 6th October 2019 is the 40th Anniversary of the MND Association. (Click here to go to their website for further information or help).

The Association was established in 1979 by a group of families affected by the disease.

40 years on, the Association funds the co-ordination of life-changing care for people living with MND, and wide-ranging support for families and carers. We also invest millions of £ in a global research effort to discover causes, potential new treatments and ultimately a cure.

We’ll mark 2019 with a relentless commitment to people living with motor neurone disease. Underpinned by a fresh optimism that together we’ll deliver our vision of a world free from MND.

See below for a timeline of how the Association has developed during those 40 years:

 

1979 – The MND Patients’ Association held its inaugural meeting before becoming a registered charity, the MND Association with Professor Stephen Hawking as Patients’ Patron.

1980 – The Association holds its first AGM, funds its first research project and begins lending equipment to people with MND.

1982 – Around 40 specialists attend the first MND Association research conference in London.

1984 -A celebrity launch of the David Niven Appeal at BAFTA raises over £170,000, the year after the actor’s death.

1986 – A year after launching a new branch structure, 40 local branches of the Association are now meeting regularly.

1987 – The Association organises its first national MND Awareness Week.

1988 – Founder member and author of ‘A plain man’s guide to MND’, Jim Tew is awarded an MBE. Annual income exceeds £1 million for the first time.

1990 – MND Connect – the Association’s helpline is launched.  The first International Symposium of ALS/MND societies is held in Birmingham attracting scientists, clinicians and charity representatives from across the world.

1992 – The Association takes a central role in founding the International Alliance of ALS/MND Associations. Membership magazine ‘Thumb Print’ is launched.

1993 – The first MND Care and Research at Maudesley/Kings College Hospital, London shortly followed by the Royal Victoria Infirmary, Newcastle. SOD 1 gene discovered, the first ever identified cause of MND.  The number of Association branches and groups reaches 100.

1996 – Riluzole (marketed as Rilutek) is licenced for the treatment of MND.

1998 – PhD studentship scheme launched.

2002 – mndassociation.org launches providing information and support to people affected by MND and a global window on the Association’s work.

2003 – The national MND DNA Bank and Clinical Database is launched.

2006 – Income tops £11 million with over £2 million raised by our branch and group network alone. Association-funded clinical trial reportsbeneficial effects of  non-invasive ventilation (NIV) in MND.

2007 – A donation in memory of Lady Edith Wolfson who died from MND, funds Clinical Research Fellowships in her name.

2008 – HRH The Princess Royal becomes Royal Patron of the MND Association and Professor Colin Blakemore becomes the Association’s President. An international team of scientists identify the TDP-43 gene as a cause of familial MND, co-funded by the Association. Our MND Garden at Chelsea Flower Show wins a Gold Medal.

2009 – An international team of scientists collaborate to find the FUS gene, co-funded by the Association.

2010 – The Association launches our online forum giving people affected by MND a safe place to support each other.

2011 – The Association’s care information achieves accreditation to the Department of Health’s Information Standard.

2012 – £500,000 of Government funding is secured to improve wheelchair services for people with MND.

2014 – The global Ice Bucket Challenge raises more than £7 million for the Association. This funds our involvement in Project MiNE the international gene-hunting initiative, which leads to the discovery of several new MND genes.

2015 – The Association announces the creation of non-clinical research fellowships. Our ‘End of life guide’ is awarded ‘Patient Information Resource of the Year’ by the British Medical Association.

2016 – The ‘NICE guideline on MND’ is published after sustained campaigning by the Association and supporters. The MND Association’s ‘Champion the Charter’ campaign asking local councils to adopt a five point charter of care is launched. First patient recruited into the MIROCALS drug trial, co-funded by the  Association.

2017 -We are awarded a major corporate fundraising partnership with Credit Suisse raising £760,000 by the end of the year. Our 28th International Symposium in Boston, USA was attended by a record 1,200 research delegates.

2018 – Patron Professor Sir Stephen Hawking dies but his legacy lives on through the Stephen Hawking Foundation and one of his iconic wheelchairs provides a
surprise cash donation after selling for £296,750 at auction. The Association’s 22nd Care Centre opens in Stoke-on-Trent.

2019 –We mark our 40th anniversary with a relentless commitment to people living with MND, underpinned by a fresh optimism that together we will deliver our vision of a world free from MND.