Ice Bucket Challenge Update

The Irish Motor Neurone Disease Association (IMNDA) is delighted to announce that the income received so far from the Ice Bucket Challenge is over €1.6m!

So to all of you who have participated and donated, we send a heartfelt thank you! The outpouring of support that we have received over the past few months has been incredible. To everyone who has donated, doused themselves in icy cold water – we salute you! Thank you for joining the fight against Motor Neurone Disease (MND).

Now it’s time to spend the money raised. It is important that we make every cent count to ensure we maximise the difference it makes to people living with, and affected by, MND.

After a consultation process with stakeholders including the MND community to discuss the most meaningful way to use this enormous sum of money, we have been able to make some short term and long term decisions. Below is a list of the confirmed projects where the money will go to:

• Research

€600,000, over 37.5%, of the funds raised will go directly to research. The team is headed up by Professor Orla Hardiman. The Ice Bucket Funds will enable the IMNDA to increase its funding on new areas of research into causes and treatment of the disease

• Expand and Improve the Nursing Service

The Ice Bucket money will enable the IMNDA to employ a third nurse for a minimum of 2 years. Expansion of the nursing service will cost approx €180,000 across the two years. We have two qualified full time MND Nurses that provide services to people with MND nationwide, these services include telephone support and home visits. We receive no funding towards our nursing service. With patient numbers increasing an additional nurse would enable us to continue and expand the amount of home visits nationwide that we can provide

• Invest in new technology to assist clients in their day-to-day lives

One of the key services of the IMNDA is the provision of specialised aids and appliances. This equipment plays a vital role in providing some quality of life for people living with MND; assisting their independence and dignity and especially facilitating their care at home in a safe environment. At least €300,000 of the Ice Bucket funds will be invested in specialised equipment

• Safe Guarding the Future of the IMNDA

The numbers of registrations have been increasing over the years; this has meant an increased demand for our services. Our HSE funding is continually being cut. We rely on fundraising and the generosity of the general public to fund over 86% of our service. We experienced a reduction in cash flow in 2013 due to a number of reasons.  Our vision at the IMNDA is a world free from Motor Neurone Disease, and in order for us to fulfil this mission we feel that we need to provide for the future of IMNDA to ensure that we stay in existence to see this vision through. €500,000, a little over 30% of the ICB money will be held in reserve to ensure the future of the IMNDA

Our Board of Trustees are ultimately responsible for deciding how the money is invested but they and the whole Association want to ensure that the support and service we provide is improved and continued.

Over the coming weeks, as the final cents are counted we will be keeping you updated with any arising projects and decisions that will be made on the Ice Bucket funds. The impact that the Ice Bucket funding will have on the lives of people living with MND will be priceless. Hopefully it will help us realise the vision – A World Free of MND.

Thank you