Press Releases Archives - Page 3 of 5 - IMNDA | Irish Motor Neurone Disease Association

ICE Bucket Challenge Donations

The Irish Motor Neurone Disease Association (IMNDA) is completely overwhelmed by the generosity of the Irish Public.  When everything settles down, we will have a consultation process with stakeholders including the MND community to discuss the most meaningful way to use this enormous sum of money, however we are committing 25% of all funds to MND Research programme which is headed up by professor Orla Hardiman.

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Ice Bucket challenge has reached 1 Million Euro

The IMNDA is completely overwhelmed by the generosity of the Irish Public and when the dust settles we will have a consultation process with all stakeholders including the  MND community to discuss the most meaningful way to use this enormous sum of money, however we are committing 25% of all funds to MND Research programme which is headed up by professor Orla Hardiman.

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Get Iced like Daithí

#Ice Bucket Challenge

Do it like Daithí!!

The Ice Bucket Challenge has taken the world by storm and you can get involved too! Soak yourself in ice cold water to support people living with motor neurone disease. Hordes of celebrities like Justin Timberlake, Bill Gates, Oprah and Justin Bieber have gotten involved in this social media phenomenon in the name of ALS, or Motor Neurone Disease (MND) as it is known here.

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The Unkindest Cut of All

The Unkindest Cut of All – Brian Carty, MND Client

I read Fintan O’Toole’s article on Tues. July 15th and found myself in total agreement with its contents. This troubled me as usually upon reading his articles I am left in a state of apoplexy. Something had to be terribly wrong and so it proved. Prior to his departure to the fat cat commissioner brigade in Brussels, Minister Phil Hogan of DOE oversaw Pobal, who distribute €1.2m on behalf of DOE to 31 organisations in The Neurological Association of Ireland,telling them they were getting zilch. Somehow it seemed a fitting tribute to the departing minister. The Taoiseach Enda Kenny, who to his credit has kept the Country afloat these last few years, tells the Dail that these groups, who all work together, can now compete against each other for an indeterminate grant. Divide and conquer? Force these groups to waste valuable time making cases for funding that anyone can see is needed. Shame on you Taoiseach defending the indefensible. New minister at DOE Alan Kelly is now presented with the first opportunity to demonstrate the effectiveness of the “New Caring Labour Party.” At the stroke of a pen renewing the €1.2m grant might increase the 7.2% of the national poll they received at the Local Elections to 9%. If he pushed the boat out and gave €1.5m they might even reach double figures. As one who has recently been diagnosed with MND I intend to spend what little time and energy I have left working to get this mean decision reversed. Maybe 300 wheelchairs being pushed past the GPO in early 2016 might concentrate political minds. As Albert Reynolds said “Its the little things that trip you up.”

 

Kildare Footballers Launch Walk to D-Feet MND

Kildare Footballers Give the Boot to Motor Neurone Disease

Walk to D-Feet MND

Cathal McNally, Tommy Moolick and Fergal Conway are giving the boot to motor neurone disease (MND) as they join the Walk to D-Feet. In Ireland, one person dies every five days from this devastating disease so the why not lace on your boots and join the Kildare Footballers and let’s take steps to D-Feet MND.

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Have Your Say on the Medical Card

Have your say on how medical need should be taken into account in the provision of medical cards

The Government has decided to develop a policy framework for medical card eligibility to take account of medical conditions. The HSE has established an Expert Panel to examine the range of medical conditions that should be considered for inclusion in the policy framework.

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Jan & Paul’s Stories

“I hate the way Motor Neurone Disease is taking my life bit by bit,” Paul Lannon

MND National Awareness Campaign

In January, Paul Lannon and Jan Battles, both of whom have Motor Neurone Disease (MND) recorded Radio Adverts to raise awareness of this disease and to try draw people’s attention to the difficulties they face every day.

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MND Medical Cards

The Right to a Medical Card

“I hate the way Motor Neurone Disease is taking my life bit by bit,” Paul Lannon

At  this  stage  of my  existence  I have  nothing to lose, I intend  going  as  far  as  it takes to change this situation, even if it means chaining myself to the railing of Leinster  House,” Brenda Maguire

“All you can do is try to cope with every challenge this illness throws at us and there are many. It is relentless,” Jan Battles

“At times we have felt very alone. Extended family have done their best to help but they have their own families to care for. One saving grace we can be thankful for is the IMNDA,” Shane Kelly

“This most cruel disease has taken with it the use of my upper and lower limbs. It has also taken my voice,” Emma Fitzpatrick

There are over 310 people living with MND in Ireland. There are more than 310 stories and 310 families battling this disease.  75% of people die within the first 3 years of diagnosis, within 1000 days.

What would you do with 1000 days if that was all you had left to live? Would you spend it fighting for your life? Then imagine having to fight tooth and nail for every service, any bit of help that could make life for those 1000 days a little bit better. The medical card situation needs to change. We urge Dr James Reilly and our Taoiseach Enda Kenny to fulfil their promise to fix this situation.

“Motor Neurone Disease is an incurable, terminal, degenerative, life limiting disease and is categorised as a neurological illness along with other conditions such as MS and Parkinson’s. Yet those with MND are not entitled to receive any type of medical card on this basis and having just been diagnosed with an incurable disease are then subjected to mandatory means testing.

The IMNDA strongly advocates that all patients in Ireland with a terminal illness are treated equally and fairly, and we would urgently call on the Minister of Health to clarify the situation and that the MND community are granted a fast track and automatic access to the medical card”, Aisling Farrell, CEO IMNDA. 

IMNDA condemns actions of former CRC board and calls for urgent appointment of charity regulator.

The Irish Motor Neurone Disease Association (IMNDA) condemns actions of former CRC board and calls for urgent appointment of charity regulator. The IMNDA is shocked and appalled at hearing that monies from fundraising were used to top up the salary of the former CRC CEO.

The IMNDA would like to clarify where the money donated to the IMNDA goes and to urge supporters to stick with us, as we depend heavily on fundraising to continue to provide vital services and support to people living with MND.

We currently raise around €1 million a year from donations and fundraising. This money goes to funding our key services including home visiting by our two MND Nurse Specialists , financial assistance towards home care , providing specialist medical equipment free of charge to our clients, supporting research into the causes and treatments of MND and our freephone Helpline & Information service for clients.

We do not receive any funding for our two nurse positions, we are very open about this fact and we campaign heavily to keep these positions as our clients rely heavily on this service.

We do receive some government funding towards the salaries of our staff. The board wish to confirm that all payments to management and staff are at the relevant pay levels befitting their position and we can confirm that no funds have been used to top up any roles or positions within the organisation. Our audited accounts are available for public record. For more information please contact the IMNDA on 1800 403 403 or email

Without the generosity of the public we would not be able to provide our vital services. Please continue to support people with MND.

Statement on Salaries and Payments

After the recent media speculation surrounding salary top ups, the Irish Motor Neurone Disease Association (IMNDA) would like to clarify where the money donated to the IMNDA goes and to urge supporters to stick with us, especially for those Christmas donations which we depend on to fund our home care payments for 2014.

Motor Neurone Disease (MND) is a progressive neurological condition that leaves people unable to do the everyday things that the rest of us take for granted. Walking, talking and swallowing may become virtually impossible. MND strikes people of all ages and there is no cure. There are currently over 310 people living with MND in Ireland. MND is often referred to as the 1,000 day disease as most people die within 1,000 days of being diagnosed.

The IMNDA provide specialised services for people affected by this debilitating disease such as equipment on loan, financial assistance towards home help, advice and home visits by MND Nurse Specialists. In order to provide these vital services the IMNDA depends heavily on the generosity of the public and supporters of the association who generate over 84% of its income.

In 2012 the Irish Motor Neurone Disease received €267,732 from the HSE, National Lottery and other publicly supported grants. €1,292,586 was raised in 2012 through generous donations and fundraising activities. In 2012 the IMNDA paid €199,814 on salaries and our CEO was paid €65,000. The remainder of the money goes to funding our key services including home visiting by our two MND Nurse Specialists , financial assistance towards home care , providing specialist medical equipment free of charge to our clients, supporting research into the causes and treatments of MND and our freephone Helpline & Information service for clients.

We do not receive any funding for our two nurse positions, we are very open about this fact and we campaign heavily to keep these positions as our clients rely heavily on this service.

As highlighted we do receive some government funding towards the salaries of our staff. The board wish to confirm that all payments to management and staff are at the relevant pay levels befitting their position and we can confirm that no funds have been used to top up any roles or positions within the organisation. Our audited accounts are available for public record. For more information please contact the IMNDA on 1800 403 403 or email

Without the generosity of the public we would not be able to provide our vital services. Please continue to support people with MND this Christmas.

RTE’s Michael Lyster goes off the roof for Motor Neurone Disease

The Sunday Game Presenter Michael Lyster was joined in Croke Park by motor neurone disease (MND) sufferer Paul Lannon and friends sporting their county colours to encourage others from across Ireland to abseil 100ft off the Hogan Stand in aid of the Irish Motor Neurone Disease Association (IMNDA).

Paul who is 43 and from Co Kilkenny was as diagnosed with MND in 2011. It takes a lot of courage to live with MND and Paul wants people to have a little courage and take that leap of faith on Saturday 12th of October to raise funds and awareness for people with motor neurone disease. Michael Lyster and good friend to the late Colm Murray wants people to support a cause close to his heart.

MND is a progressive neurological condition that leaves people unable to do the everyday things that the rest of us take for granted. Walking, talking and swallowing may become virtually impossible. MND strikes people of all ages and there is no cure. There are currently over 300 people living with MND in Ireland. MND is often referred to as the 1,000 day disease as most people die within 1,000 days of being diagnosed.

The IMNDA provides specialised services for people affected by this debilitating disease such as equipment on loan, financial assistance towards home help, advice and home visits by MND Nurse Specialists. In order to provide these vital services the IMNDA depends heavily on the generosity of the public and supporters of the association who generate over 84% of its income.

Since 2009, over 200 thrill seekers have completed this challenge with the numbers growing each year and an outstanding €135,000 has been raised. If you would like the chance to wear your county colours in Croke Park and take part in this unique challenge please freefone 1800 403 403 or email  for more information. This event is in association with www.adventure.ie

Press Release August 2013

  • Launch of the Food for Hope cookbook, featuring 60 recipes from Ireland’s top celebrities, in support of the Irish Motor Neurone Disease Association
  • Gabriel Byrnes Chicken Tangine with Apricots, Aslan’s Irish with Beef in Guinness, Enda Kenny’s stir fried pork fillet and Maeve Binchy’s potato cakes and mackerel smokies, to name but a few, all on the Food for Hope menu
  • Launch night event at Cork’s Silver Springs Hotel involving celebrity chef Neven Maguire, and MC’d by Newstalk presenter Jonathan Healy
  • Fair City’s Maclean Burke to attend along with many other well-known faces who all contributed to the book

The Irish Motor Neurone Disease Association (IMNDA) is proud to announce an evening with Neven Maguire and the launch of the much anticipated celebrity cookbook Food for Hope on September 11th at the Silver Springs Convention Centre, Cork.
The public is being asked to don their aprons and dig deep to raise much needed funds to support the continued work of the Association, ensuring those suffering with motor neurone disease (MND), their families and carers, will continue to have the vital support from the IMNDA.

The cookbook was the brainchild of Cork woman, Katie Hallissey, whose father John passed away from MND in 2010. Katie, along with Marie Reavey of the IMNDA and Dolores MacKenna, friend of the Association, approached celebrities from all walks of life in Ireland asking them to submit their favourite recipes; the response was overwhelming. Amongst the first to respond was the late Maeve Binchy, whose recipe for potato cakes and mackerel smokies arrived the morning after she passed away.

Motor neurone disease (MND) is a neurological disorder that selectively affects the cells that control voluntary muscle activity including speaking, walking, swallowing, and general movement of the body. It is generally progressive in nature, and causes increasingly debilitating disability and, eventually, death.

Cork currently has the most motor neurone disease sufferers registered in the Republic outside of the capital. There are currently 35 sufferers, with an excess of 300 living with MND at any one time in Ireland.

Katie Hallissey said; “We are extremely grateful that so many of our well‐loved Irish celebrities, from all walks of life, have lent their support. We are equally grateful for the support we will have on the night from Neven Maguire who is sure to keep us entertained with his many culinary delights. All monies raised on the night, as well as from the sale of the book, will go towards helping people living with motor neurone disease, their carers and families, in addition to the ongoing medical research into finding both a cause and a cure for this disease.

The help provided by the Irish Motor Neurone Disease Association offers families facing an insurmountable challenge the assurance of the best care, without having to worry about how it’s funded. I have seen at first hand the impressive work of the Association so I ask everyone, both locally and nationally, to come out in support of what will be a memorable event and buy a copy of Food for Hope”

Marie Reavey, IMNDA Regional Development Officer said; “I would just like to reiterate what Katie has said without the help and support of all involved in this project we would not be here promoting this great cookery book, Food for Hope. We are a very small organisation that relies heavily on fundraising to provide the support and services to the MND community in the Republic of Ireland. Motor Neurone Disease (MND) was described in a recent documentary by late RTE Sports Commentator Colm Murray who is living with MND, as the PITs Progressive Incurable Terminal. The everyday things like talking, walking, eating and swallowing become virtually impossible to people living with MND, yet in most causes the mind stays totally alert.Simple things like having an itch on your nose and not being able to scratch it. The diagnosis is a cruel one – a life expectancy three to five years or (1,000 days).The IMNDA provides home nursing support, financial assistance towards home care, the loan of specialist medical equipment, and supports research into the causes and treatment of the condition which affects the ability of cells in the body to communicate simple tasks we mentioned above almost impossible.”

A number of companies have already generously donated to the project, but it’s hoped that others will be able to lend their support.

Tickets for the event cost €20 and are on sale from imnda.ie , Freefone 1800 403 403 or by contacting Marie on 087‐416 8698 or mreavey@imnda.ie

“Food for Hope” will be on sale from the end of August 2013 via imnda.ie, Londubh, Easons and Amazon websites.

http://www.easons.com/p-1357189-food-for-hope.aspx#sthash.nLHsZZ5F.dpbs

http://www.amazon.com/Food-Hope-Cookbook-Support-Association/dp/1907535314

http://www.londubh.ie/?p=2255

NOTE TO EDITORS:

Samples of celebrity recipes available on request

Interviews available on request

Katie Hallissey available on 086-0429696

Marie Reavey from the Irish Motor Neurone Disease Association available on 087-4168698