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The Launch of Living with Motor Neurone Disease: A complete guide

Living with Motor Neurone Disease: A complete guide

Every two days someone on the island of Ireland is diagnosed with Motor Neurone Disease (MND). MND is a neurodegenerative condition in which the nerves that control voluntary muscles stop working. This affects ordinary everyday activities that we take for granted. Walking, talking, even breathing may become virtually impossible.

Being diagnosed with MND can be difficult which is why the Irish Motor Neurone Disease Association (IMNDA) has launched “Living with Motor Neurone Disease: A complete guide.” This publication is the first of its kind in Ireland. It is a vital resource, designed to provide all the information needed to negotiate a path through the challenges that MND may present.

Speaking at the launch in University College Dublin, RTE’s Claire Byrne said, “Navigating the path following a life changing diagnosis can be bewildering and exhausting. This wonderful book shines a guiding light on the road ahead with the experts who have walked it- the medics, the caregivers and, perhaps most importantly, those who are living with Motor Neurone Disease. I know this guide will provide some comfort to those who are starting on this road and their families, whose burden will only be eased if we all commit to supporting them.”

While MND is a rare disease it is a devastating diagnosis so good quality information from people who understand MND is vital. It takes time to learn about MND, to absorb the implications of it; to talk about it; to let family adjust to it; to help friends understand it and to learn to live a life that is altered in which the future is changed and the present is challenging. Living with Motor Neurone Disease: A complete guide is a practical and reassuring book at this time.

Speaking at the launch Lillian McGovern CEO, IMNDA said “We are delighted to have this book available for the families and carers of those with MND. The book provides practical information on managing MND and provides an insight into the many varying and challenging aspects of the illness. We hope that it will also inform healthcare professionals working with families in supporting them through their MND journey.”

Living with Motor Neurone Disease is a step-by-step guide. It explains what MND is, how it is diagnosed and managed; how it affects the individual and the family; the psychological dimensions of the condition; the caregiver experience; living with the condition and facing the future too. It shows how to talk to children and adolescents, how to tell family and friends, how to adapt working conditions and home life. It describes all the supports; medical, psychological, mechanical, technological and practical to cope with the daily impact of living with MND particularly the crucial supports provided and coordinated by the IMNDA.

Living with Motor Neurone Disease is the fourth book in the Cork University Press MindYourSelf book series edited by Clinical Psychologist Dr Marie Murray. A diagnosis of MND can be overwhelming so good quality information and support from people who understand MND is vital at this time.

Speaking at the Launch, Dr Marie Murray said “We hope that what emerges from reading this MindYourSelf book is not how grim MND is but how astonishingly people cope with it; how great the love of families for each other; how concerned are friends, how expert the professionals; how determined the researchers to crack the code, find the cure and blitz it into history. The book is dedicated to all who are living with MND and everyone it has bereaved. Having collaborated with the IMNDA for the past two years on this book there are insufficient superlatives to describe what the IMNDA provides in compassionate practical care – all based on its maxim ‘until there is a cure, there is care.”

Prof Joe Carthy commented “This wonderful book, which will be so helpful for anyone touched by MND, forms part of the great legacy of the late Fr. Tony Coote. Fr. Tony was an inspirational figure whose “Walk while you can” campaign did so much to raise funds and awareness of MND. The idea for writing the book came from conversations Marie had with Fr. Tony.”

Living with Motor Neurone Disease: A complete guide is available from Cork University Press €14.95 at www.corkuniversitypress.com or from www.imnda.ie Royalties to Irish Motor Neurone Disease Association
ENDS

For further details, please contact Derbhla Wynne pr@imnda.ie or call (083) 014 7549

Photos provided by Garrett White Photography

St Sylvester’s GAA raises €4,225

 

A presentation from St Sylvester’s GAA was made to Séamus Bonner, a representative of the Irish Motor Neurone Disease Association (IMNDA). The proceeds of a local walk which coincided with Charlie Bird’s epic climb of Croagh Patrick on April 2nd last. The total raised was €4,225.

Thanks to everyone who contributed so generously.

Picture:- Séamus Bonner (IMNDA), Babara Condon (Chair, Healthy Club Committee), Stephen MacDonagh (Walk Organiser)

(and not forgetting Sadie in the back refusing to be left out)

 

 

We are hiring

Role of Information and Advocacy Officer with the IMNDA (Maternity Cover)

 

IMNDA was founded in Ireland in 1985. Our mission is to provide care and support for people with motor neurone disease (MND), their families and carers. We also fund and promote research that leads to new understanding and treatments and brings us closer to a cure for MND. We aim to ensure that those with MND and their families are at the very heart of our work and our focus is to help them live as active independent citizens throughout their illness.

 

The Association now wishes to appoint an Information and Advocacy Officer to cover maternity leave for a minimum period of nine months and is offered on a fixed term contract basis.

IMNDA operates a 35 hour working week, an annual leave entitlement of 25 days (full annual entitlement) and salary is based on experience and is negotiable.

 

The Office is located at Unit 3, Ground Floor, Marshalsea Court, 22/23 Merchants Quay, Dublin 8.  The role is office based but there is a level of hybrid working in operation for the duration of the contract.

 

About the Role

Reporting to the Head of Communications and Advocacy the person appointed will provide information, advice and advocacy services to people with MND and their families.  In addition, the person will act as a pivotal resource to the IMNDA nursing service in assessing and providing information and advice to IMNDA clients.  Working with the Head of Communications and Advocacy the role will involve assistance with the development of a national advocacy strategy for the organisation in highlighting gaps in services, local issues and problems as they relate to IMNDA clients.

 

The Key Responsibilities

The direct delivery of information, advice and advocacy services to people with MND and their families and carers and assisting in sign posting them to appropriate healthcare professionals, as appropriate.

 

Processing of all registrations of new IMNDA service users and liaison with nursing staff in ensuring IMNDA service provision and take-up including in-house grants and funding.

 

Development and maintenance of the “Community Hub” as a communications resource for those with MND in sharing information and providing peer support.

 

Operation and maintenance of the CRM system for the monitoring and evaluation of the Information and Advocacy service – currently Salesforce.

 

Provide support to the Head of Communications and Advocacy in identifying local gaps in service, areas of improvement and changes needed to improve the lives of people with MND and their families.

 

Assist the Head of Communications and Advocacy to prepare information leaflets, policy statements, papers, submissions and reports with evidence-based recommendations.

 

Establish relationships with other service providers at local and national level both at statutory and voluntary level in the development of information and advocacy generally and on joint initiatives as they arise.

 

Act as a resource to all IMNDA nursing and administrative staff on all advocacy and entitlement issues.

 

Experience and Background Required

A minimum of three years working in a similar role in advocacy, communications, social policy or law.

 

Working knowledge and understanding of how the social welfare, health and welfare systems operate in the Irish context.

 

Excellent organisational, administrative, written communication and IT skills.

 

Desirable skills and abilities are:

Ability to absorb, analyse and evaluate information from a variety of sources.

 

Ability to represent, negotiate and communicate on a client’s behalf at all levels.

 

Ability to work on own initiative and as part of a small team while being able to work across other areas in ensuring all team members are updated on issues that affect their work with clients.

 

Flexibility to work across all functions within a small organisation and ability to work evening or weekend hours occasionally as the need arises.

 

The closing date for applications is May 2nd 2022

 

Applicants should submit a detailed CV and covering letter stating their suitability for the role and forward it by post or email to:

 

Tracy Hutchin

IMNDA

Unit 3, Ground Floor

Marshalsea Court

22/23 Merchant’s Quay

Dublin 8.

Email: thutchin@imnda.ie

 

 

 

Brain Awareness Week 14th -20th March

National Brain Awareness Week will be here soon, and takes place this year from March 14th – 20th 2022. The theme is “Together We Are Stronger: Promoting the Value of Teams, Partnerships and Collaborations in Neurological Care and Research”. For more, please visit loveyourbrain


Director of Nursing and Patient Services

Role of Director of Nursing and Patient Services with the Irish Motor Neurone Disease Association

IMNDA was founded in Ireland in 1985. Our mission is to provide care and support for people with MND, their families and carers. We also fund and promote research that leads to new understanding and treatments and brings us closer to a cure for MND. We aim to ensure that those with MND and their families are at the very heart of our work and our focus is to help them live as active independent citizens throughout their illness.

IMNDA is going through a time of change – a recent move to a new flexible office space, embracing new flexible working arrangements as well as introducing new technology to support our fundraising initiatives has taken place. The Association now experiences greater collaboration with statutory agencies in ensuring a seamless service to those affected by MND throughout the pandemic and beyond.

These changes, together with a new five year Strategic plan driven by a committed and enthusiastic team working to support those living with MND places the Association in a strong position to meet the challenges of the future.

As a result of an organisational staffing review the Association now wishes to appoint a Director of Nursing and Patient Services to take a pivotal role in shaping its services nationally to ensure that our clients and families receive the highest level of care and support as they navigate this difficult disease.

About the role

This new role will provide the strategic and operational delivery of all nursing care and patient support services across IMNDA and in partnership with statutory and non-statutory agencies.

This is an exciting time to join our Association as we transform the way we deliver care and support services regionally. This role will be integral in leading on the development of new regional service offerings that support the delivery of the Association’s strategic aims.

In this pivotal role you will lead and manage our outreach nursing service, oversee the day to day operational management of patient services and our relationships with statutory and non-statutory partners, ensuring effective monitoring of the quality of our services and those services provided by our partner agencies.  You will also be responsible for the services team in delivering the highest level of support and care through the provision of specialist equipment, home care grants, support with counselling and therapies.  Monitoring, development and evaluation of these services is key to the success of this role as well as identification of additional needs of our clients and their families.

Reporting to the Chief Executive Officer and with the support of a Clinical Advisory Panel, you will also be at the forefront of engagement with external clinical and healthcare professionals nationally and internationally.

What are we looking for?

We are looking for an exceptional candidate with a background in health care management, who can demonstrate strong experience of operations management, experience of managing clinical and non-clinical teams and the ability to manage the complex needs of IMNDA clients and families.  We need someone who can take on the broad scope of the role but is flexible in approach to deal with short, medium and longer term aspirations in ensuring that all our clients are provided with the highest level of service, regardless of where they live.

Your key skills will also include:

  • Demonstrable ability to develop business cases and proposals for service development
  • Excellent leadership skills, emotional intelligence and the ability to coach and develop individuals and teams
  • Demonstrable ability to manage organisational change programmes
  • Performance and quality management skills
  • Proven interpersonal and negotiation skills with the ability to persuade, influence and when appropriate, challenge with tact and diplomacy
  • Pro-active approach to work and problem solving and the ability to spot and deal with issues as they occur

 

A detailed Job Description is available and the closing date for applications is 31st March 2022.

Applicants should submit a detailed CV and covering letter stating their suitability for the role and forwarded to:

Lillian McGovern

Chief Executive Officer

IMNDA

Unit 3, Ground Floor

Marshalsea Court

22/23 Merchant’s Quay

Dublin 8.

lmcgovern@imnda.ie

Full Job Specification can be downloaded here:

Job Specification Director of Nursing and Patient Services

Climb with Charlie

Climb with Charlie took place on Croagh Patrick on Saturday 2nd April 2022. This is a day not to be forgotten by everyone involved in this event. The overwhelming support received by Charlie from the general public, has been a huge source of strength for him and his family. People gathered in their thousands at Croagh Patrick to support Charlie and to climb their own mountain.

As well as Croagh Patrick, thousands of you took part in climbs all over Ireland and around the world. #ClimbwithCharlie raised over €2.3million in vital funds for two charities:

Pieta House, who support people and communities in crisis by providing freely accessible, professional services to all.

Irish Motor Neurone Disease Association who provide care and support to people with Motor Neurone Disease, their families, friends and caregivers.

A video of this wonderful day in Croagh Patrick was made and can be viewed here

Thanks to everyone for your wonderful support. It has been incredible, you all extended the hand of friendship to Charlie!

#ClimbwithCharlie

Climb with Charlie Video Launch

On the 2nd April Charlie Bird will climb Croagh Patrick to raise funds for two charities which are very close to his heart – Irish Motor Neurone Disease (IMNDA) and Pieta, Ireland’s national suicide prevention charity.

Charlie has been overwhelmed by the support he has received and is extremely thankful to people all over Ireland for their generosity of spirit. On the 2nd April, Charlie, his family and close friends will undertake the climb as a group and ask that they be given the time and space to do this on that day. There will not be a ticketing system for the #ClimbwithCharlie on Croagh Patrick.

Following meetings and advice from experts on climbs, we are kindly asking people to focus on their local areas. This will be on the grounds of public health & safety, protection of the reek and seasonal restrictions which means that large attendance should not take place and we are committed to adhering to this advice.

Charlie still wants everyone to join him on the day, in a sense of solidarity he is urging people to do a climb in their local area.  If you want to #ClimbwithCharlie, you can take part or host a climb or walk in your local area, details of all local walks organised can be found at www.climbwithcharlie.ie

#ClimbwithCharlie is a fundraising campaign and you can set up a fundraising page or make a donation here https://www.climbwithcharlie.ie/create-page/. All funds raised are for IMNDA & Pieta House.

If you choose to take part in your local #ClimbwithCharlie, we recommend that you visit www.climbwithcharlie.ie to see advice around safety and tips. We want to take this opportunity to thank each and every one of you for the generous support that you have shown to Charlie and also for your interest in #ClimbwithCharlie campaign. We want to ensure that everyone is able to get involved and do their climb safely, we wish you all the best with your training and preparation for your #ClimbwithCharlie in your local area.

If you want to follow #climbwithcharlie channels on social media, here are the links:

Instagram: @climbwithcharlie

Facebook: @Climb with Charlie

Twitter: @climb_charlie

 

Barry’s Story

My name is Barry Jennings and I’m from Balla, Co. Mayo.

I got diagnosed with bulbar palsy, a type of motor neurons disease in June, 2018 at the age of 31.

In the Christmas of 2017 I started noticing problems first. I have always had nasal problems and during the Christmas period I was playing music. I was singing and noticing I couldn’t sing as good as I used to so went to my doctor and was sent to an ENT specialist. Everything showed up fine and I was put on some nasal sprays and rinses. At a wedding of a friend of mine, in early 2018, my friend was joking thinking I was drunk because I was slurring my speech, I had only had a couple of pints so I knew this wasn’t the case. I went back to my doctor, Elaine Broderick in Balla and upon talking to her, she asked, did I ever dribble when drinking and I said I had. She said it would be no harm to see a neurologist.

I had only started a new job surveying water meters and within a day or two she called me and said I had an appointment the following day, I was hesitant as I didn’t want to ask for time off but thanks to her persistence I agreed.

I went to Galway University Hospital to the Medical Assessment Unit and was tested for various things. It was thought I might have myasthenia gravis, so I was put on tablets for the weekend but unfortunately they didn’t change anything and I went back into hospital Monday and by the Wednesday I was given the dreaded diagnosis from Dr Hennessy.

It’s true when they say on TV that when you get devastating news your hearing gets muffled and I had a ringing in my ears from the shock! Thankfully my wife was with me and she was strong enough to take in the information from Dr Hennessy and Teresa, who was very good at explaining and understanding. That was the worst day of my life. We took a walk around the hospital and as you can imagine every emotion was felt. Sadness that I may never see my nieces and nephews grow up, anger thinking what did I do to deserve this and utter shock and disbelief in thinking the doctors must be wrong.

I went home and had the horrible task of facing my loved ones with this awful diagnosis. As time went on I met Fidelma, one of the amazing MND nurses and with her honestly and positivity, I slowly felt better. Initially, I intended on learning everything I could about this disease but very early on I decided I didn’t want to know the lifespan details or the odds, I’ll learn what I need to and get on with living my life. I found that’s the ultimate decision, give up or keep going, it’s as simple as that.

Thankfully I’m very lucky in my progression rate, bulbar palsy starts with your speech and nearly 4 years on I still have a relatively understandable speech. I have lost most of the power in my hands, arms and shoulders. Not being able to play guitar, drive or beat people in FIFA anymore have been major losses but I can still lift a pint of Guinness 🙂 and thankfully my legs aren’t affected yet.

With the daily help from my wife and help from my PA Pádraic, my family and friends, I am very well cared for. I now realize that taking each day as it comes is the best way going forward for me and that’s what I’ll continue doing.

At the end of the storm, there’s a golden sky.

Michael’s Story

 

My Journey, Michael Harte

“I first noticed something was wrong in December 2019 when I woke up several nights with a bad cramp in my right leg.

In January 2020, I was 3 days in bed over the long bank holiday weekend with a bad cold and pain. I was sweating profusely and getting more ill by the day but still thinking it would pass. Tuesday morning, I went to the doctor and was rushed to Ballinasloe Hospital where, within 2 hours I was brought to the ICU unit and remained there for 12 days. They first said my whole system had broken down and that it was a virus of some sort.

When I got out of hospital, I started to stumble and fall on occasions.  The leg cramps continued. I went to the doctors at Primary Care and got a really thorough examination for an hour and Dr McCormack came to the conclusion that it was foot drop. (A condition that happens when your foot doesn’t lift in the upward movement) As it wasn’t his area of expertise he suggested a leg brace and recommended me to see a consultant and in the meantime have a MRI scan done in Portiuncula Hospital. Results back didn’t show anything sinister on scan.

Due to Covid 19, I still hadn’t seen a consultant. I still had pain in my leg so went back to my own doctor Dr Harney who sent me to Mullingar Hospital in October for admittance. I was there for 10 days and went through many tests and was taken back and forth to Beaumont Hospital and the Mater Hospital by ambulance. Due to Covid, I was on my own when I finally got to meet the consultant in Mullingar who broke the news to me that I had MND – Motor Neuron Disease.  It was a clinically cold matter-of-fact statement and I went into compete shock and got quite upset as I instantly thought of my lovely sister Tess who had been diagnosed with MND 4 years earlier and had only lived a very short time after diagnosis. It was something that had never crossed my mind that I also could get. The consultant said he couldn’t do any more for me and referred me to the MND Clinic under the care of Professor Orla Hardiman for a full diagnosis definition on my condition.   When I got home I did a full internet search on Professor Hardiman and was very comfortable with what I read. No matter what, I would be in the best of hands.

I was assigned to a MND Nurse, Fidelma. She is super and one of the mobile nurses who look after MND patients around the country. Aisling is also another MND nurse who looks after me. When Fidelma first came to visit she was very reassuring and set up the appointment with Professor Orla Hardiman who diagnosed me with the strain of Muscular Spinal Detoriation. I was put on medication to slow down the detoriation process.

I can no longer go up any stairs/steps so my bed is in our kitchen/dining room. Work will start on turning our utility room into a wet room so that I have shower facilities and also that I will no longer have to endure the steps down into that room that’s there currently.  We are currently converting the garage into a bedroom for me. I had to get a new front door as the old one wasn’t wide enough to facilitate a wheelchair, something I wouldn’t have thought about,  and also a ramp at my back door to assist me get in and out of my home..

I have an Electric Armchair to sit on which is amazing and I have an air cushion for that. I am comfortable enough but I do have pain in my back but its being controlled. I have an electric bed too, unfortunately, I just can’t get comfortable sleeping and lying down is difficult. I am going to get an air mattress next to take the pressure off me.

I have a fold up, light wheelchair for any trips out in the car. I am getting a cool motorised Electric Wheelchair. I was amazed to be told that I had to do a driving test for several hours to be able to operate it. Health & Safety procedures are important. I use a Rollator inside my home to assist me move from the bed to the chair to the bathroom.

I have a Motorised Muscle Movement Machine that I sit at, that exercises my arms and legs. I don’t have to do any work. It does everything for me! I have a Nippy Ventilation Pressure Machine which I need to help me breath. It seems to take the heavy pressure I feel, off my lungs and chest. I use it day and night at intermittent times.

My wife, Maeve, is my Carer 24/7. She gave up her job with Athlone Community Radio to dedicate all her time to me.

Outside of my official treatments I have been treated to Seaweed Baths, Steam Baths, Nitrogen Gas Treatment, Body Massages, Hot Towel Shaves, Head Massage and Pedicures by some wonderful friends.

I have been on MND clinical trials for the past year at Beaumont Hospital, St James Hospital and Trinity College which may help me or indeed others in the future. I continue to partake in the clinic trials programme.

Last Christmas, I was very sick for 15 days with a bug. It wasn’t Covid or MND related but it took a lot out of me. I am back in good form now and looking forward positively.

On the plus side, I can still drive! We have an automatic car with hand controls. I don’t often get out of the car but it’s still good and it’s good for my sanity.

I was born in Glasgow, Scotland. My parents moved back to Sligo, Ireland with their 5 children when I was 16 after the sudden death of my younger brother Nicholas.    I was christened Michael, but I am also known as Mike and ‘Jock’! (Jock because I was born in Scotland). I met my wife Maeve (from Galway) in Sligo 42 years ago on the CB Radio! (That’s a whole other story!). We are married 37 years and live in Athlone for the past 27 years. I would have been a fit person with plenty of strength and energy until MND got a grip on me. I have had many changes of career and was always a hard worker. I liked to do my best always.

I wouldn’t think anything of getting up at 5am and working till the late hours.

I have plenty of hobbies, I love everything about Formula 1 and all motor sport and its memorabilia and could speak all day on the subject. I have met many great stars of the F1 circuit and treasure those moments. I did rallying as a driver and navigator in my youth.

I also loved swimming, scuba diving, surfing, and all water sports really.

I love photography and have been all over the world taking photographs. I am grateful for that time, experience and fun! Now I wade through great images and remember.

I have no bucket list…just taking it one day at a time. Life is too short to be in a rush.

 

This year I am partaking in a Silence Programme to raise awareness for MND… which will be difficult as I love to talk!

However, talking does tire me out, but this is because of my breathing. I get short of breath and need the Nippy Machine to help me.

When people visit me I keep my speaking time short. I then use Nippy and if they are still there when I finish I continue on talking! Anyone that knows me knows I always have loads to say!

My voice is very important to me. I still have lots of stories to tell….”

 

 

 

 

 

 

Sometimes Silence Speaks Volumes

Sometimes Silence Speaks Volumes

My voice is very important to me. I still have lots of stories to tell….”

Imagine an hour…a day….a week without speech. Imagine not being able to say ‘I love you’ this Valentine’s Day. Unfortunately that is the fate met by most people living with Motor Neurone Disease (MND). More than 80% of people living with MND will experience some form of speech difficulty during their illness – some will lose their voice completely.

Michael (Mike) Harte is 64 and from Westmeath and was diagnosed with Motor Neurone Disease in January 2021. This year Mike is taking part in the Sponsored Silence to raise awareness of MND… which will be difficult as he loves to talk.

 “Talking tires me out, but this is because of my breathing. I get short of breath and need the Nippy Machine to help me.  When people visit me I keep my speaking time short. I then use Nippy and if they are still there when I finish, I continue on talking! Anyone that knows me knows I always have loads to say!” says Mike

Barry Jennings is 35 from Balla in Mayo and was diagnosed with bulbar palsy, (a type of MND) at just 31 years of age.  He had only started a new job surveying water meters and within a day or two the doctor called and told him he had an appointment the following day to see a Neurologist.

“Christmas 2017, I was singing and noticing I couldn’t sing as good as I used to. And then at a wedding, my friend was joking thinking I was drunk because I was slurring my speech, I had only had a couple of pints so I knew this wasn’t the case.” says Barry

This February we are once again running our sponsored silence campaign #Voice4MND. All we ask is that you stay silent for a minimum of 30 minutes so you can experience what it would be like to lose your voice. Imagine one hour, imagine one day, imagine one week without your voice. We want you to give up your voice so you can experience what it is like for someone with MND.

All you have to do is to pick a day and duration for your silence. Then maybe think if you had no voice for a day how would you communicate – by app, by pen and paper?

To sign up for our Sponsored Silence just visit our website www.imnda.ie and fill out the online registration form. It’s that simple! Spread awareness by sharing your sponsored silence on social media by using #Voice4MND. Nominate friends and families to join you.

 “My voice is very important to me. I still have lots of stories to tell…” says Michael.

Sometimes silence can speak volumes. Take on our challenge this February. Don’t let Michael & Barry suffer in silence; don’t let them live without a voice. Lose your voice so that others can be heard.

Thankfully I’m very lucky in my progression rate, bulbar palsy starts with your speech and nearly 4 years on I still have a relatively understandable speech.” Says Barry

For more on Michael’s story visit here

For more on Barry’s story visit here

ENDS

 

For more information please contact:

Derbhla Wynne (086) 014 7549 or email pr@imnda.ie

 

Images by Garrett White

Caption 1: Pictured is Michael Harte showing his support for the IMNDA February Sponsored Silence #Voice4MND. Imagine one hour, imagine one day, imagine one week without your voice. Lose your voice so that others can be heard. Register at www.imnda.ie

Caption 2: Pictured is Barry Jennings showing his support for the IMNDA February Sponsored Silence #Voice4MND. Imagine one hour, imagine one day, imagine one week without your voice. Lose your voice so that others can be heard. Register at www.imnda.ie

 

Notes to Editor:

Motor Neurone Disease (MND) is a progressive neurological condition that attacks the motor neurones, or nerves, in the brain and spinal cord. This means messages gradually stop reaching muscles, which leads to weakness and wasting.  MND can affect how you walk, talk, eat, drink and breathe. However, not all symptoms necessarily happen to everyone and it is unlikely they will all develop at the same time, or in any specific order.

 

The Irish Motor Neurone Disease Association (IMNDA) is the only organisation of its kind in this country. It was set up in May 1985 to provide care and support to people with Motor Neurone Disease, their carers, families and friends. There are currently over 400 people living with MND in Ireland.

 

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 one of our 4 MND Nurses. In order to provide these vital services the IMNDA depends heavily on the generosity of the public and supporters of the association who generated 65% of its income. In 2020, the association availed of extra government grants due to the pandemic. 30% of our funding came from statutory funding, 65% from fundraising & donations and 5% other sources.

 

 

Sponsored Silence #Voice4MND 2022

Sometimes Silence Speaks Volumes

Support people with Motor Neurone Disease this February

This February we are once again running our sponsored silence campaign #Voice4MND. All we ask is that you stay silent for a minimum of 30 minutes so you can experience what it would be like to lose your voice. Imagine one hour, imagine one day, imagine one week without your voice. We want you to give up your voice so you can experience what it is like for someone with Motor Neurone Disease.

More than 80% of people living with MND will experience some form of speech difficulty during their illness – some will lose their voice completely.

All you need to do is pick a day and duration for your silence, register and share!

Take on our challenge this February and lose your voice so others can be heard.

This year our campaign is fronted by Michael Harte and Barry Jennings. They wanted to share their stories so that others could understand the impact of what life is like when you lose your voice. Read their Ambassador stories by clicking here.

Sometimes silence can speak volumes. Take on our challenge this February. Don’t let Michael and Barry suffer in silence; don’t let them live without a voice. Lose your voice so that others can be heard.

Please Register HERE today. Thank you.

If creating a fundraising page isn’t for you, alternatively you can Donate Online HERE.

GAA Stars Support Hurling For Hope fundraiser

GAA Stars Support Hurling For Hope fundraiser in aid of Mayo Roscommon Hospice Foundation & Irish Motor Neurone Disease Association 

 A group of friends, players, mentors and teammates from Ballyhaunis GAA Club in Mayo, have come together and organised a unique fundraising event to support two charities, the Mayo Roscommon Hospice Foundation and the Irish Motor Neurone Disease Association.

Launched today at Croke Park, by Jacqui Hurley RTE Sport, Keith Higgins, former Mayo footballer and Tom Parsons CEO GPA, the Hurling for Hope fundraiser will also see Keith along with clubmates  “solo” a hurling ball from the Mayo Roscommon Hospice in Castlebar via Claremorris, Ballyhaunis and Castlerea and finish at the Mayo Roscommon Hospice in Roscommon, covering a distance of 100kms. The players will be joined by a myriad of current and past GAA players along the route. The event will take place over four days commencing on Wednesday 23rdMarch and finishing on Saturday 26th March.

CEO of Mayo Roscommon Hospice Foundation Martina Jennings said:

“We are so delighted that Frank Browne and the huge team involved have chosen us as one of the benefitting charities, for this unique and challenging fundraiser.  2021 saw the Foundation launch our specialist palliative care unit in Roscommon, the second unit to be launched in 3 years and this was made possible from incredible fundraisers just like Hurling For Hope. As we continue to fund palliative care services in our community and hospices we encourage everyone to get out and support this fantastic group along their journey and we are so grateful to all the organisers.”

Lillian McGovern, CEO of IMNDA said.

“Irish Motor Neurone Disease Association is delighted to be one of the chosen charities by the Hurling for Hope campaign. This imaginative event is going to create great awareness of Motor Neurone Disease in the major towns throughout Mayo and Roscommon. The services provided by the IMNDA will benefit greatly from this fundraiser and will allow us to deliver the vital services to families that have been affected by MND. We are a small organisation and we rely heavily on fundraising & donations from events like these. We would like to take this opportunity to thank everyone involved in Hurling for Hope and wish them all the success with their fundraising endeavours.”

Jacqui Hurley, RTE Sport said.

“I’m delighted to be involved in this amazing fundraising initiative, supporting two  great charities. I think the last 2 years have shown us just how much events like this can lift community spirit. I’m sure the lads will knock a bit of craic out of the journey along the way too and I’m looking forward to following their progress.”

Keith Higgins. 4 Time All Star said.

“On behalf of the Hurling For Hope group, we are delighted to be undertaking this challenge on behalf of both the Irish Motor Neurone Disease Association and the Mayo Roscommon Hospice Foundation. Our aim is to raise awareness and some much needed funds for these two fantastic charities which are close to all our hearts.

We hope that as many people as possible can come out and support us along the journey and even solo a few miles.”

idonate: www.idonate.ie/hurlingforhope

Twitter: @hurling4hope

Facebook: Hurling For Hope

Insta:@hurling4hope

ENDS

For further information contact hurlingforhope@gmail.com or 087 0515370

Climb with Charlie – Up-dates

#ClimbwithCharlie

‘We would like to thank everyone for their interest in Climb with Charlie on April 2nd next in aid of IMNDA and Pieta. As you can appreciate we have been inundated with queries and are currently working on all the details. We will have further information over the coming days to confirm arrangements for the climb. Watch this space!’

Climb With Charlie

On Saturday April 2nd, Charlie Bird will climb Croagh Patrick in aid of the Irish Motor Neurone Disease Association and Pieta House.

Due to Charlie’s Motor Neurone Disease diagnosis, the climb will be an immense challenge but he is determined to do it to highlight the vast mountains so many people have to climb in their everyday lives due to severe illness, physical and mental.

The campaign is encouraging everyone to ‘Climb With Charlie’, meaning not just climbing physical mountains, but getting through all the serious challenges in their lives.

While Charlie and his close friends and family embark on their climb on the weekend of April 2nd, the campaign encourages everyone all over Ireland and indeed all over the world get behind his efforts and arrange their own climb in their local area, with all monies raised going to two really worthy charities.

People can donate to the campaign or find out more on www.climbwithcharlie.ie All funds raised will go to the Irish Motor Neurone Disease Association and Pieta House.

Due to COVID restrictions, health & safety, and ongoing environmental works on Croagh Patrick, the campaign cannot facilitate large numbers of people on Croagh Patrick on April 2nd. Therefore, Charlie is encouraging people to climb in their local area, and to keep on climbing the mountains of their personal battles.

Additional:

Charlie Bird pictured along Bray Promenade. Pic Steve Humphreys 1st December 2017

 

Irish Motor Neurone Disease Association (IMNDA)

Motor Neurone Disease (MND) is a progressive neurological condition that attacks the motor neurones, or nerves, in the brain and spinal cord. This means messages gradually stop reaching muscles, which leads to weakness and wasting.

MND can affect how you walk, talk, eat, drink and breathe. However, not all symptoms necessarily happen to everyone and it is unlikely they will all develop at the same time, or in any specific order.

MND strikes people of all ages and there is currently no cure for MND, symptoms can be managed to help you achieve the best possible quality of life.

The Irish Motor Neurone Disease Association (IMNDA) is the only organisation of its kind in this country. It was set up in May 1985 to provide care and support to people with Motor Neurone Disease, their carers, families and friends.

There are currently over 400 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.

Our key services include:

  • Home visiting by our Four MND Nurse Specialists
  • Financial assistance towards home care
  • Providing specialist medical equipment free of charge to our clients
  • Assistance towards counselling
  • Supporting research into the causes and treatments of MND
  • Freefone Information support line for clients and families

The Association relies heavily on fundraising activities from our members and supporters. We need to raise over 80% of our overall income.  It costs approx. 2.4 million to run the Association each year.

 

 

 

Sparkly Angels Christmas Cards Fundraiser for IMNDA December 2021

AliMay (7), Saorlaith (6), Fiadh (4) and Maurice Grimes (1), better known as the Sparkly Angels are the next generation Entrepreneurs! These kids did a course back in Spring 2020 called Funancial Freedom which taught them how to set up small businesses such as Car washing and bread making. It also taught them about giving back to society and supporting good causes. One cause was near and dear to their hearts and that was IMNDA.

Eugene Loftus has been a close friend to our family for years and was a standout member to the Community through Football, Tennis, the Arts Society, Farming and gardening. He was so passionate about all of these and appreciated the essence in everything. The Sparkly Angels were huge fans of his and when he passed away 2 years ago, we were all deeply sadden, especially when he had so much more to give, and we had so much more to learn from him.

Picture from L to R: Eugene, Saorlaith, Maeve (Mummy), Fiadh, Mairead (Granny) and AliMay.

November 2020 the kids had an idea to make timber reindeers and snowmen (with the help of Mummy and Daddy 😊) and to give half of the money to IMNDA, they raised €300, and we were all thrilled. It created great awareness of this magnificent cause and the kids learned how exciting it is to raise money for others.

A year older and wiser the kids wanted to repeat this success. They had been making Birthday cards and Thank You cards during the year and they got the idea to make Christmas Cards. The sparkly Angels were very busy designing and making Christmas cards. This time all proceeds went to IMNDA. Daddy contacted IMNDA where we received great support, Jackie designed a poster with the Christmas Cards and sent us out T-shirts and a collection box and gave us great advice to set up an iDonate page. From there we set up an iDonate page and within 4 days almost €500 was raised, already exceeding last year’s fundraiser.

If you would like to help these sparkly angels raise some more funds for the IMNDA, please visit here to purchase the beautiful cards that they have made… :-))