Today on Global MND Awareness Day we’re pleased to share some insight in to the amazing work MND Association do.
With part of the team based at CAN Mezzanine, Old Street it was perfect timing to catch up and find out about challenges they face and how people can get involved.
What is motor neurone disease (MND)?
Although a relatively rare condition, many are aware of it either from the Ice Bucket Challenge back in 2014, through the life of the late Professor Stephen Hawking or personal experience.
MND is a fatal, rapidly progressing disease of the brain and central nervous system, which attacks the nerves that control movement so that muscles no longer work. While symptoms vary, over the course of their illness most people with MND will be trapped in a failing body, unable to move, talk, swallow, and ultimately breathe. Some people with MND may also experience changes in thinking and behaviour, and 10-15% will experience a rare form of dementia. There is no cure for MND.
MND kills a third of people within a year and more than half within two years of diagnosis. A person’s lifetime risk of developing MND is up to 1 in 300. It can affect any adult, but is more common in older people: it is most commonly diagnosed between the ages of 50 and 65. There are about 5,000 people living with MND in the UK.
Who are MND Association?
The MND Association is the only national organisation supporting people affected by MND in England, Wales and Northern Ireland.
The MND Association’s vision is of a world free from MND. Until that time they are doing everything they can to enable everyone with MND to receive the best care, achieve the highest quality of life possible and to die with dignity.
What is the biggest challenge for MND Association?
MND Association believe now more than ever that a world free from MND is possible and through the increased pace of research our understanding of MND is growing all the time.
However, until they are able to cure MND there are many challenges they face as they work to better meet the needs of people with MND, their carers and families in the here and now.
Current challenges include;
- The impact both direct and indirect of the UK’s departure from the EU
- Data regulations
- Meeting the diverse need of people we serve and represent
The importance of research
Part of the work the MND Association does is fund and promote ground-breaking research around the world to identify treatments and find the cure for the disease.
The MND Association team based at CAN Mezzanine, Old Street however, are more likely to be conducting research into the issues that impact on the lives of people living with and affected by MND so that we can bring about positive change through our influencing work.
Today the team are launching a report on Universal Credit, which outlines some of the key issues likely to affect people living with MND as the new benefit continues to roll out across the country.
How can people get involved/support the work you do?
“As today is Global MND Awareness Day, we’d encourage you to familiarise yourself with MND and see if there’s anything you can do to help in the fight against this cruel disease.
Many other CAN customers have already helped us by eating the cakes we silently sold in the foyer of CAN Old Street for Silence Speaks last year, which we did to show solidarity with those who lose the ability to speak due to MND.” Daniel Vincent, Senior Policy Advisor, MND Association
The next London based event is one to not be missed! If you’re feeling active then find out more about our London City Swim on 21st September.
To stay up to date on how you can get involved, follow us on Twitter
Why did MND Association choose CAN?
Although the national MND Association office is in Northampton, a significant proportion of the work they do from a policy and campaigning perspective centres around activity that is predominantly London-based. CAN Mezzanine therefore provides a great location and facilities for those who need to work here. It’s also a really useful hub for meetings to bring together team members who work regionally.