A massive thank you to Maebh O’Herlihy who organised an Ecumenical community carol service in her church on Achill Island on 11th December. (more…)
IMNDA Announces Plans for the “Charlie Bird Development Fund”
New MND Nurse & MND Research Trials now possible thanks to Charlie
The IMNDA is delighted to announce that it has started the recruitment process to hire an additional Clinical Nurse Specialist – all thanks to monies raised by Charlie Bird and his phenomenal fundraiser, Climb with Charlie, which saw over €1.7 million raised for those living with Motor Neurone Disease (MND). This is the first of many projects that the IMNDA are delighted to unveil. (more…)
Our congratulations to Professor Hardiman on receiving this very presitigious award. (more…)
Food and Drug Administration (FDA) approves AMX0035 (Amylyx) for the American market.
During a meeting of the FDA’S Peripheral and Central Nervous System Drugs Advisory Committee (PCNSDAC) on Thursday September 29 2022, the Amylyx drug AMX0035 received conditional approval under the name RELYVRIO. This means that Relyvrio is available for American citizens. What does this approval mean and how does this affect patients in Europe?
Lights On for Motor Neurone Disease
Going Green for 21st June Global MND Day
Today, the 21st June, is Global ALS/MND Day. Every year the International Alliance of ALS/MND Associations marks 21st June as the global day of recognition of ALS/MND – a disease that affects people in every country of the globe.
ALS/MND is a global problem. It does not discriminate on the basis of race, ethnicity, socioeconomic status or region. There are people living with ALS/MND all over the world. For every person diagnosed, the impact of the disease will be forever felt by their loved ones.
Meet our Faces for this years National Awareness Campaign – Drink Tea for MND. This June we are once again raising awareness of Motor Neurone Disease (MND) over the radio, on social media and in the national and regional newspapers. We approached a number of people living with MND and asked them to share their stories in the hope of raising awareness as to how this condition affects them.
During the month, we also need to raise funds to support the services that we provide. In order for you to help us to raise awareness of MND and raise funds for IMNDA, we are asking you to organise a Drink Tea for MND party. You can invite people to your home or garden, gather your colleagues at work or even get the whole community involved at your local Sports Club! We would like you to share your experiences of MND and spread the word of this condition to your local community.
Featured below are a number of people who are helping us out to raise awareness of MND this June and how it affects them; Mark Dignam from Offaly is fronting the campaign, he is the voice for the advert on national and regional media and he has shared his story. To read Mark’s story, please visit here
Roy Taylor from Dundalk is another face for the campaign. Roy is a well known singer songwriter and member of the band Jump the Gun who represented Ireland in the Eurovision Song contest in 1988. Roy is helping us to promote the campaign on social media this year. He has recorded a support video and his Drink Tea Jingle that he recorded with his band Jump the Gun is also available for the campaign too. You can listen to it hear
Margaret Mulvany is from Galway and lives with the husband Liam. She is also putting her face to the campaign for this year. Margaret has kindly put herself forward for national Media. For more on Margaret’s story, please visit here
Todd Nugent from Mullingar is another face for the campaign for 2022. Todd can be seen pictured here with this dog Kai. This is Todd’s second year to take part in the campaign. He has three guiding principles “take things one day at a time, focus on what I can do as opposed to what I can’t. To quote the singer Bob Dylan; The slow one shall later be fast, the fast one shall later be last.” For more on Todd’s story, please visit here.
Andy McGovern from Leitrim is also our face for this years campaign. Andy is a long standing member of the IMNDA and he has done many campaigns for us over the years, he always puts his name to a campaign and willingly goes on radio to highlight MND and how it affects him. Andy has also written a book about his life with MND and he reckons he is one of the longest survivors of MND in the world. To read about his life with MND and purchase a copy of his book please visit here.
Denis Cagney from Dublin and he was diagnosed with MND on April 2020. He was 67 and living a very active life, running, golfing, cycling and doing some part-time consultancy. He and his wife Margaret were retired and life was great. But he had a little weakness in his left thumb and he had a few falls when running so he went to get checked out. For more on Denis’s story, please visit here.
To get involved in the Drink Tea for MND Awareness campaign this June and organise your very own tea party, please visit here
“The enormity of what I faced was too big to contemplate – it could only be bitten off in pieces,” said Mark Dignam, living with MND
Motor Neurone Disease National Awareness Month
It all started so simply. A slight limp in his left leg. In April 2020, one month after an unprecedented lockdown and a world full of restrictions, Mark Dignam (50) was faced with another challenge. How to tell his wife and two children that he had just been diagnosed with Motor Neurone Disease (MND).
“Slowly but surely the mountain will be climbed, one foot in front of the other. An ankle splint and walking stick have been replaced by a walker and more recently, a powered wheelchair for longer distances,” said Mark.
Mark is fronting our Drink Tea for MND campaign this June. He shares his story about life with Motor Neurone Disease in the hope that greater awareness will generate increased support for those living with this degenerative and debilitating condition.
“When people ask me what the disease is like, I say it’s intrusive – it intrudes on almost every aspect of your life. And just when you think you have managed a symptom or restriction, it intrudes again. Even though the symptoms of MND are very individual, it’s this intrusion that is common, very personal and debilitating,” said Mark.
To help support Mark and the MND Awareness month, we want you to Drink Tea for MND in June! So put the kettle on and have a cuppa to help provide essential services to over 400 families’ right across Ireland affected by this disease.
“Initially, I chose to tell a very small group of immediate family and sought out a therapist to start to put order on what was happening. The IMNDA paid for the therapy and laid out a network of immediate support that all of my fellow sufferers rely on every single day,” said Mark.
To organise your very own Drink Tea for MND event, all you have to do is visit imnda.ie and register your tea event. For more information just email email@example.com if you can’t host a tea event, why not make a tea donation by visiting here https://fundraise.imnda.ie/event/drink-tea-for-mnd/search-for-fundraiser
“Two years after my diagnosis, the fact that I have made it this far, that life goes on and continues to be so worthwhile, gives me all the strength and determination I need,” said Mark.
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. 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 80% of its income.
“I have learned to be so grateful for the independence I have retained and the parts of me yet untouched by the disease; my mind, my voice and my sense of humour,” said Mark.
For more information please contact:
Maeve Leahy/Derbhla Wynne (01) 670 5942 or email firstname.lastname@example.org
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. MND is often referred to as the 1,000 day disease as most people die within 1,000 days of being diagnosed. 1 person dies every 3 days from MND.
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
For further details, please contact Derbhla Wynne email@example.com or call (083) 014 7549
Photos provided by Garrett White Photography
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)
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:
Unit 3, Ground Floor
22/23 Merchant’s Quay
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
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:
Chief Executive Officer
Unit 3, Ground Floor
22/23 Merchant’s Quay
Full Job Specification can be downloaded here:
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!
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:
Facebook: @Climb with Charlie
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.