Motor Neurone Disease Association - England, Wales and Northern Ireland

A world free from MND

Registered Charity Number: 294354
Northampton, Northamptonshire

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Thank you for your Ice Bucket Challenge donations

Date posted: 26 Aug 2014

We are delighted to announce the income received so far by the Motor Neurone Disease Association from the Ice Bucket Challenge is a staggering £6m.

As a relatively small charity, this has been an historic fortnight. Last year we received an average of 13,000 donations a month. From the ice bucket challenge alone we have now had over 750,000 donations. Challenges are still being held and money continues to pour in. Thank you everyone.

In this short time the Ice Bucket Challenge has also massively increased awareness of this devastating disease. And think of the difference this massive boost in funds will do for our world-class research and support for people living with this disease and their families.

With the phenomenal amount of money being raised for the MND Association quite understandably and quite rightly we are now being asked “how will you spend this money?”

Having received such a large and unexpected bonus to our funding it is very important that we now spend it wisely – to get the maximum impact for people with MND.

So over the coming weeks we will be drawing up comprehensive plans to do exactly that. We will be consulting with the MND community to ensure the views of people with MND and their families are taken into account.

However, this unexpected bonus of £6m does allow us to immediately bring forward certain projects that were already in the pipeline and to fast-track new ideas.

For instance, we are currently in the process of awarding seven new research grants, totalling over £1 million, to UK research teams for studies aimed at understanding the causes of MND, the processes that lead to motor neuron degeneration and the development of new approaches to treating the disease.

Many of these grants will run for up to three years, so the incredible generosity from donors to the Ice Bucket Challenge means that we can be sure of sufficient funding available for the lifetime of each award.

We have also been asked about the impact of the $millions that have been raised for the ALS Association in the USA.

The Ice Bucket Challenge is a global phenomenon. MND is a global disease. So we need a global solution.

Millions of pounds, dollars, and euros have been donated to various MND charities across the world and we already run collaborative research projects with many of them. We need to be joined up in our thinking about joined up research funding between different countries to maximise the impact of this funding phenomenon.

You can still donate by:

  • Text ICED55 £5 (or other amount) to 70070 (only available in the UK);
  • Visit our Just Giving page; or
  • Call 01604 611860 referencing the 'Ice Bucket Challenge'.

How your money helps people living with MND

Donations made to the Motor Neurone Disease Association are used to fund the 3 main pillars of our work in support of people with MND and their families:

  • undertaking research to find the causes of the disease and a cure;
  • providing care and support for people with MND and their families; and
  • raising awareness to ensure people with MND are recognised by the wider society.

Last year the MND Association total expenditure was £13.5m. It broke down as follows:

  • Programme work £9.4m
  • Support costs £1.6m
  • Fundraising £2.5m

70% of donations went directly and immediately to fund our programme work: world class research to find a cure for this dreadful and fatal disease, provision of care and support to people with the disease in the short time they have left (e.g. communication aids for those who have lost their voice or provision of specialist wheelchairs), and raising awareness in the wider society of the complex needs of people with MND.

11% is spent on essential support functions (e.g. IT systems – essential for any organisation these days, rental of the office building, the finance team who ensure our funds are managed in the most effective way, etc.).

The remaining 19% was spent on fundraising. For every £1 we spent on fundraising last year we raised £3.60 in return. This means that more than the original donation actually ends up going to our programme work.

In addition, where we jointly fund research with other organisations (such as the medical Research Council), for every £1 we put in they often match this with another £2 or £3.

In the following weeks we will look at how best to use the donated funds to have the biggest impact for people with MND both now and in the future. This could be funding important new areas of research that may provide the breakthrough we are all working towards, providing specialist equipment to help those living with the disease such as communications aids, or funding to help with adaptations to allow people with the disease to live at home for longer.

Wherever the money is spent you can be assured that it will be spent in the best possible way and have a huge impact. And that it is truly appreciated.

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