IMNDA Ice Bucket Survey

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We are delighted to announce that the income received so far by the Irish Motor Neurone Disease Association from the Ice Bucket Challenge is a staggering €1.6m!

So to all of you who have participated and donated, we send a heartfelt thank you.

The IMNDA would now like to give you the opportunity to have your say.  We are asking one simple question in a very short survey – Where do you think the Ice Bucket Challenge money should go?

As promised, we are asking you to share your views because we want to understand what you consider to be the priorities when addressing the needs of current and future clients.

The only decision that has already been made is that we commit at least 25%of the money to fund clinical research into the causes of, and new treatments for, MND.

The final decision on how the money is spent rests with the board of the IMNDA, but your views will help guide them, and your feedback is really important at this significant juncture for IMNDA.  Thank you in advance for taking part and we look forward to updating you in the weeks and months ahead.

Please note the closing date for completing the survey is Friday 7th November.

Ice Bucket Survey – Suggested Projects:

Please carefully read the below information then click here https://www.surveymonkey.com/s/35973JX to go to the survey which will allow you to pick out your top three priorities from the 6 optionsfor future spending. You will also have the opportunity to add anything we haven’t included under the category of “Other“.

1.         Further increase the amount of money on research, including causes and treatment:

The IMNDA provides funding towards research on an annual basis; we fund scientific and medical research of the highest quality specific to MND. We provided a grant amount of €25k for 2012, and for both 2013 & 2014 we provided €50k towards Research Motor Neurone (RMN).

The IMNDA funding has helped to fund one position into research on MND at the Academic Unit of Neurology at Trinity College Dublin – Dr Sinead Maguire.  The MND research programme spans from early drug development to health services research, and includes projects in MND epidemiology, genetics, imaging and psychology.  Trinity researchers work closely with top teams across the world all of whom share the aim of finding new treatments. The team is headed up by Prof. Orla Hardiman. The Ice Bucket Funds will enable the IMNDA to increase its funding on new areas of research into causes and treatment.

2.         Expand and improve nationwide nursing service:

We have two qualified full time MND Nurses that provide services to people with MND nationwide, these services include telephone support and home visits. The nurses provided this service to 351 clients in 2013. In 2009 we had 220 patients. There has been a distinct rise in numbers and needs.

In 2013 year the association also developed new standards to the nursing services and these are as follows;

Standard 1: This is the ‘first initial telephone contact’ to the person with MND or a family member. This service achieved a 95% outcome that was achieved within 14 days of the person being registered with the IMNDA.

Standard 2: This is the ‘home visit’ by the MND Nurse to the person with MND in their family home. This service achieved a 60% outcome that was achieved within 6 weeks of the person being registered with IMNDA with MND.

An additional nurse would enable us to improve these standards and provide more home visits nationwide and so achieve Standard 3.

Standard 3: MND Nurses will have a minimum of two contacts per year with each registrant / family.

We envisage the patient numbers will also continue to increase in the coming years, which will stretch the current service.

3.    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 patients; assisting their independence and dignity and especially facilitating their care at home in a safe environment, on their journey with this degenerative disease. These aids are returned to the Association when no longer required; some are not suitable for re-use whilst others can be recycled to other clients. It is necessary to constantly purchase new equipment in order to replace worn out stock and also to meet the needs of an ever increasing number of MND clients. The number of clients last year (2013) with MND is now increased to 351 compared to 263 five years ago (2008). This is an 18% increase in people being diagnosed with MND over 5 years. The Ice Bucket funds will enable us to maintain this service as the client population rises and will also be able us to invest in more expensive equipment such as the ‘eye gaze’ which costs at least €15,000.

4.         Increase support services provided by IMNDA:

We currently have two Service Staff supporting our clients and we also provide counselling and home helps hours. We have experienced a significant increase in the need for additional home help hours. The IMNDA Home Help Top Up Grant is there to top up existing HSE Home Care Packages. With the recent HSE cuts the IMNDA Home Help Top Up Grant has increased by €50,000 when compared to this time last year. The Ice Bucket funds would enable us to try and maintain the sustainably of this service based on the needs of our clients, the increase in the MND population and the cuts within the HSE.

5.       Additional national and local campaigning to raise awareness of MND:

The Ice Bucket Challenge really helped propel the cause of the IMNDA to a wider audience, but informing and educating the public about the challenges of Motor Neurone Disease is an ongoing challenge. The more people understand about the illness, the more likely they are to donate money to support patients and fund new research. IMNDA undertook a radio and internet awareness campaign in June of this year, which led to a doubling of the money from the annual “Drink Tea for MND” drive. Some of the Ice Bucket Challenge money could be spent on keeping the charity’s message at the forefront of people’s minds throughout the year, and ultimately help those who fundraise for the us.

6.         Create a special “rainy day” fund to generate interest from the Ice Bucket windfall, and use this interest to help fund services for future clients:

As you know, the number of registrations is on the increase and with increased awareness; we envisage a similar trend going forward.  As was pointed out at the AGM, there was a reduction in cash-flow in the 2013 year.  Our results to August 2014 (excluding Ice Bucket donations) show a further reduction to the tune of approximately €166k in cash reserves. This was due to reduced funding along with reduced donations to that date. This is a worrying trend.  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.

Now please visit https://www.surveymonkey.com/s/35973JX to have your say before Friday 7th November.

Thank you in advance for your co-operation.

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Aisling Farrell, CEO