IMNDA announces a total of €1,400,000 from #icebucketchallenge

IMNDA announces a total of €1,400,000 from #icebucketchallenge Clients and families to be consulted on how best cash can be spent to meet their needs

The Irish Motor Neurone Disease Association can today reveal that the viral internet phenomenon the “Ice Bucket Challenge” has resulted in donations to the charity totalling 1.4 million euro, with a final total to be released at the end of September. Based on the number of donations, it’s estimated that as many as half a million people across the island of Ireland deliberately drenched themselves in ice cold water to raise much needed funds for the association, which helps some 330 patients and their families deal with the challenges of motor neurone disease. Patients, staff and supporters have today put a “thank-you” video on-line, in acknowledgement of the effort made by donors.

Dr. Declan Mac Daid, chairman of IMNDA said, “We have been blown away by the generosity of the Irish public, and have watched on almost in disbelief as the total raised kept rising and rising, and people’s timelines kept filling and filling. We cannot thank people enough for what they did. The focus now is on how the money can best be spent to deal with the needs of those living with motor neurone disease, and their families.” The money is to be used in a variety of ways to be outlined following a detailed consultation with the IMNDA’s clients, their families, their carers and supporters of IMNDA. A questionnaire is in the process of being prepared which will be sent to every patient and user of the IMNDA service across Ireland to identify where the need is greatest.

Dr Mac Daid says, “The only thing we know for certain is that 25% of the money raised (approximately €350,000) will be given towards clinical research into causes and treatments for MND, led by Professor Orla Hardiman of Trinity College Dublin. This will be in addition to funding which the IMNDA already give regularly to support research. Outside of that, we will spend the next few weeks getting feedback, and considering where investment isneeded most. We look forward to investing in services and technology into the future, and we hope to use some of the money to establish a reserve fund to allow for the fact that the number of people being diagnosed with MND continues to rise. The number of patients has risen from 220 in 2009 to 330 today. Through the generosity of the Irish public, we are now in a better position to help those people who have yet to be diagnosed”.

The IMNDA has also committed to ongoing openness and transparency about how the donations are used, with Dr Mac Daid concluding; “We will have a section on our website (IMNDA.ie) which will detail exactly how the ice bucket money has been spent. And, as we have always done, we will publish our annual report and finances online in full.”

The Ice Bucket Challenge originated in America, with people challenging each other to be drenched in ice-cold water, before donating money and nominating three others to do the same. The Irish truly embraced the initiative after Daithi O’Se accepted the challenge on the first night of Rose of Tralee, before one of the biggest TV audiences of the year. Amongst the other celebrities who helped the IMNDA’s cause were Paul O’Connell, George Hook, Sharon Ni Bheolain and Amy Huberman. This remarkable campaign could not have happened without the support from ‘Like Charity’. The ice bucket challenge marks the third viral campaign for the Dublin-based company that provides its text-donation service free of charge to Irish charities.

ABOUT IMNDA The Irish Motor Neurone Disease Association (IMNDA, CHY 8510) is the only organisation of its kind in the country. We are dedicated to working on behalf of people living with MND and their families and carers. Our key services include home visiting by an MND nurse, financial assistance towards home care help and the supply of specialised equipment on loan. We also fund and promote research into the causes and treatments of MND.

ENDS

FOR MORE INFORMATION, PLEASE CONTACT Aisling Farell, CEO, IMNDA, 01-8730422, afarrell@imnda.ie

Derbhla Wynne/ Maeve Leahy, Media and Communications, IMNDA, 01-8730422, pr@imnda.ie