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 (MND) in England, Wales and Northern Ireland. MND is also known as amyotrophic lateral sclerosis (ALS) or, in the United States, Lou Gehrig's disease.
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 MND.
Activities
Research
The MND 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 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.
The Association funds research that includes animal testing.[4][5]
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 90 volunteer branches and groups across England, Wales and Northern Ireland, that assist with regional fundraising activities[2]
- 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.
- Undertaking awareness activities across the year using media and PR opportunities. In 2019, the Association's 40th year this included an art exhibition at the OXO gallery.
- Sharing information, informal advice and expertise via their podcast, MND Matters (launched in March 2021).
Patrons and ambassadors
Current patrons and ambassadors for the organisation include:
- Chris Broad, former English cricketer[6]
- Benedict Cumberbatch, actor[6]
- Rob Burrow, former England rugby league international, living with MND[6]
- Kevin Sinfield, former England rugby league international, and former Leeds Rhinos teammate of Rob Burrow[6]
- Baroness Finlay of Llandaff, palliative medicine consultant and parliamentarian[6]
- Charlotte Hawkins, television presenter[6]
- Eddie Redmayne, actor, who played Professor Stephen Hawking (who lived with MND) in the film The Theory of Everything[6]
- Jeremy Vine, television and radio presenter[6]
- Gina Bellman, actor[7]
- Lily James, actor[8]
Past patrons
