The Motor Neurone Disease Association
The Motor Neurone Disease (MND) Association is the only national charity in England, Wales and Northern Ireland focused on improving access to care, research and campaigning.
They are a membership organisation with over 9,000 members forming a powerful national and local network that provides information and support alongside fighting for improved services. MND Association has over 7,000 active volunteers dedicated to improving the lives of those affected by MND.
People who suffer with MND are at the heart of everything that the Motor Neurone Disease Association do.
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Our Interview with the MND Association
The MND Association was founded in 1979 by a group of volunteers with experience of living with or caring for someone with MND. We are the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.
Since then, we have grown significantly in many ways, and our annual income is around £18 million and growing year on year. We also have an ever-increasing community of volunteers, supporters and staff, all sharing the same goal – to support people with MND and everyone who cares for them, both now and in the future.
Despite six people being diagnosed with MND every single day, it remains a little-understood condition. MND is usually rapidly progressing – it kills a third of people within a year and more than half within two years of diagnosis.
A diagnosis of MND is extremely frightening, leaving those affected unsure of what to do next and where to turn. Without the right support, they can be left feeling fearful, isolated and alone. At the same time, because many people with MND can deteriorate so quickly, it is even more important for them to get the support of specialists in a range of areas as soon as they need it.
Money raised is used to support our mission, which is threefold:
- We improve care and support for people with MND, their carer’s and families.
• We fund and promote research that leads to new understanding and treatments and brings us closer to a cure for MND.
• We campaign and raise awareness so the needs of people with MND and everyone who cares for them are recognised and addressed by wider society.
We have established a world-class reputation with healthcare professionals, policy-makers researchers, supporters and the people at the very heart of our work – those living with the devastating effects of MND. We are the only national health charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.
Our support activities for people with and affected by MND include:
- A network of multi-disciplinary Care Centres which provides high quality coordinated care from expert professionals in one place.
• A network of regional staff providing front line support to people with MND and education to other care-givers.
• MND Connect – an online and telephone information service and lifeline for those affected by MND.
• Equipment Loans – life-changing medical and communication equipment.
• Association Visitors – a volunteer expert advisor and friend for all those affected by MND.
We are a leader in the funding and promotion of the world’s most ground-breaking and pioneering research into MND. The Association funds biomedical research into the causes of MND, the search for a diagnostic test and a cure, and healthcare research to improve the lives of people living with MND. As of 1st January 2018, our research portfolio consists of 96 grants worth £15.5 million. Last year we awarded 29 new grants, worth £2.7million. We collaborate with research teams all over the world in the battle against MND.
Together with our amazing campaigners we have been able to make a difference to the lives of people with MND, their families and carers. A recent success through our campaigning and lobbying was the publication of a NICE (National Institute for Health Care Excellence) Guideline on MND. The guideline sets out in detail what good care looks like and how it should be delivered by NHS and statutory service. It will shape future care and have a huge influence over the quality of life for people living with MND, their families and carers. This fundamentally echoes what we have been campaigning on for several years. It urges a joined-up approach and where a multi-disciplinary team works together it extends life.
Our work is only made possible thanks to the incredible generosity of our supporters. Donations come from a variety of sources, from regular monthly donations, imaginative corporate support or unusual fundraising challenges. All support reaches people with MND, their families and carers and enables us to invest in MND research.
You can read more about out work and how we make a difference here:
You can read more about how people can get involved with the work of the Association in the above link.
It is difficult to pick out one single biggest achievement to date. The work we do to support those affected by MND is so varied. You can read more about our work in the impact reports which are produced annually.
Here is our latest report (which reflects on the work carried out in the previous year) the next report will be out soon:
“I am very optimistic that we are beginning to get somewhere, and I am sure in the next five years there will be progress and new treatments to add on to the effects of riluzole that we already have” – Prof Dame Pam Shaw, Professor of Neurology, University of Sheffield.
The scale and momentum of research into motor Neurone disease is greater than ever before, however we know that the fight against the disease remains a long and challenging one. As an example, a little over a decade ago there was only one known genetic cause of MND. Since then gene discovery has accelerated and we now know 75% of the genes that cause the rare familial MND in the western world. The MND Association has been at the heart of these advances, and there is increasing optimism that we have truly begun the countdown to new treatments, and a cure. The Association is currently helping to fund a number of projects and trials that aim to find new treatments, which you can read about here:
The key to defeating MND lies in fostering strong collaboration between leading researchers around the world and sharing new understanding of the disease as rapidly as possible. This was the MND Association’s rationale behind the creation of the International Symposium on ALS/MND.
Each year, the Symposium attracts over 1,000 delegates, representing the energy and dynamism of the global MND research community. It is the largest medical and scientific conference specific to MND/ALS and is the premier event in the MND research calendar for discussion on the latest advances in research and clinical management.
“We will beat this disease through global collaboration. Bringing the world’s MND researchers together in one place to share ideas and expertise enables them to go back to their laboratories with new knowledge to complement their own research.” – Dr Brian Dickie, Director of Research, MND Association
We believe now more than ever before that achieving our vision of a world free from MND is possible. We intend to be part of the history in ending the disease. “The vision of a world free from MND is hugely ambitious, but I agree with the MND Association that the skill and dedication of scientists make this goal achievable in our lifetime.” – Professor Colin Blakemore
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