News Archives - IMNDA | Irish Motor Neurone Disease Association

IMNDA Virtual AGM & Conference 2021 – Thursday 30th September 

IMNDA Virtual AGM & Conference 2021 – Thursday 30th September 

We are really looking forward to welcoming you to our Virtual AGM & Conference. Once again this year we will have a host of fantastic speakers.

Please read on for some notes on the event. You will also find log in details below. (more…)

We are Hiring!

Title of post:               Corporate Fundraising Executive

Organisation:             Irish Motor Neurone Disease Association (IMNDA)

Reporting to:              Fundraising Manager

Contract:                    Permanent

Location: This is an office-based role with hybrid working under consideration.

The office is based at Unit 3, Ground Floor, Marshalsea Court, 22/23 Merchants Quay, D08 N8VC.

Who we are

The Irish Motor Neurone Disease Association (IMNDA) supports people living with Motor Neurone Disease (MND), their families and carers across Ireland. Vital services include home visits from four specialist MND nurses, funding towards home care hours and the supply of specialised equipment on loan. On average over 80% of the IMNDA’s income comes from fundraising and donations. The Association has grown over recent years, raising more funds and supporting more families.

Role Overview

Reporting to the Fundraising Manager and working as part of a small, dedicated team this is an exciting new role of strategic importance to the development of the IMNDA’s corporate income. The Corporate Fundraising Executive will be directly responsible for developing and implementing the IMNDA’s Corporate Fundraising Programme and building on previous and current corporate support. This role might suit someone at an early stage of their career interested in moving to the voluntary sector with an established charity and wishing to make a real difference to people’s lives.

Key Responsibilities:

  • Deliver ambitious fundraising targets as a key member of the fundraising team.
  • Revive relationships with established corporate donors and manage the cultivation and stewardship of new prospective supporters.
  • Undertake thorough Charity of the Year research, creating a calendar of key dates.
  • Be the main contact for all Corporate fundraising; from company events and donations to CSR applications and pitches.
  • Adapt and deliver all IMNDA annual events and campaigns to a Corporate market.
  • Keep in regular contact with corporate donors to develop strategic partnerships and funding relationships.
  • Work closely with PR/Comms Executive in the compiling of impactful and professional corporate materials in line with the ethos of the IMNDA.
  • Develop and submit persuasive proposals for corporate sponsorship for secure funding towards the IMNDA’s various support services.
  • Compile and share detailed reports regularly with the Fundraising Manager identifying areas for leverage and opportunity.
  • Attend events and conferences to build the IMNDA’s profile within the corporate sector and identify opportunities to present IMNDA’s work to prospective and existing donors.

General:

  • To ensure confidentiality on all matters and information obtained during the course of employment.
  • To present and act in a professional manner at all times.
  • Ensure compliance of charities regulation, data protection acts, governance and best practice.
  • Keep up to date with the current issues and developments in the charity sector.
  • To assume responsibility for his/her own professional development and safe work practice.
  • Establish memberships and liaise with local bodies, agencies and other associations. to ensure industry best practice.
  • Undertake training as necessary.
  • Provide occasional support if another team member in the department has an urgent need.

This job description is not exhaustive. It merely acts as a guide and may be amended to meet the changing requirements of the Association at any time after discussion with the post holder.

Personal Specification

Essential:

  • 3 years relevant experience either gained in the charity sector or in a business development role.
  • Experience of setting and working to budgets, deadlines, targets and plans.
  • Ability to work as both a key member of a team as well as proactively working alone.
  • Flexible especially when having to fulfil an unexpected deadline.
  • Excellent relationship management skills with proven experience in account/ customer/donor management.
  • Proven experience in developing new business.
  • Excellent communication and presentation skills – both written and verbal.
  • Strong empathy and compassion.
  • A team player who will always represent the IMNDA with the utmost professionalism.
  • Strong organisational skills and attention to detail and ability to manage multiple projects and demands.
  • Excellent attention to detail.
  • Experience inputting data and generating reports using a CRM.

Desirable:

  • Previous experience working in a not for profit environment.
  • Experience using CRM Salesforce.
  • Experience completing successful grant applications.

Contract

This is a permanent role which includes a 6-month probationary period.

Benefits include:

  • Salary negotiable, depending on experience.
  • 25 days annual leave.
  • Company pension scheme on completion of probationary period.
  • Access to VHI Employee Assistance Programme.
  • Flexible and friendly working environment.

If you would like to be considered for this position, please forward a cover letter stating your suitability, along with your CV to Gemma Watts: gwatts@imnda.ie

Closing date for applications is 5pm on Monday 27th September 2021.

We would advise early application as CVs will be reviewed as received

Fundamental Rights of ALS/MND Community Survey

This is an international survey that is based on the fundamental rights of people with ALS/ MND and it is open for 3 weeks. The ALS/MND Alliance is urging the MND Community to take part in this as soon as possible.

The key objectives of the survey are:

  • Find strengths and weaknesses at a global level and be able to learn from the best and address ways to help associations and regions.
  • Provide data from each country with the opportunity to benchmark and evaluate.
  • Generate further questions and raise topics that require further attention and discussion at roundtables or the annual conference.
  • Highlight the areas the Alliance can prioritize for the creation of resources to help member associations in their advocacy.
  • Provide insight for further focused surveys on specific topics to capture more granular data.

 

The survey is optional and can be accessed here https://survey.alchemer-ca.com/s3/50118484/2021-ALS-MND-Social

ALS/MND Patient Fellows Program

ALS/MND Patient Fellows Program
Bringing People with ALS/MND and Caregivers Into The Scientific Discourse
Have you ever wondered what the Patient Fellows Program for the International Symposium is all about? Are you interested in connecting with 1000+ researchers?
Please listen to the video below from past fellows, Philip Green and Gwen Peterson, to hear what the Patient Fellows Program is all about!
Once you have had a chance to watch the video, please encourage people living with ALS/MND to apply to be a Patient Fellow this year. This is a global program and we would encourage applicants from anywhere, however, the program is only offered in English.
To apply for this programme, visit here https://www.alspatientfellows.org/
Applications for 2021 are open as of 5th July
Deadline for applications is the end of the day on Friday, 20th August.

Prize Home Kilkenny

Prize Home Kilkenny is organising a house raffle where you can win a home in Kilkenny, plus a cash prize of €20,000, all while donating to the Irish Motor Neurone Disease Association!

The great news is that €100,000 from the tickets’ earnings will be donated to help support the association’s activities and the families that need help dealing with immense costs that come along with this disease.

All you have to do is to buy your ticket here

Make sure to follow them on social and show some support too for more visit here  

 

Win a signed Young Riders jersey from 2020 Tour de France Winner Tadej Pogačar!!

This amazing prize for all cycling fans along with a whole host of other amazing prizes are up for grabs over the next couple of weeks thanks to our fundraiser Malcolm McGrath who has organised this on-line event to raise funds for #imnda and awareness of #MND as Malcolm’s wife Sinead was diagnosed with MND just last year.
 
Listed below are all the wonderful prizes that he has on offer! For more on his story and to support this event, please go to https://www.idonate.ie/raffle/Raffle4IMNDA
RAFFLE4IMNDA – JERSEY SIGNED BY TADEJ POGAČAR
 
FIRST PRIZE – SIGNED JERSEY
 
Lots of spot prizes also, including:
€250 Monart Spa Voucher
€50 Cycle Superstore Voucher
€50 Cigala Cycling Voucher
2 month gym membership for The Maldron Hotel in Wexford
1-2-1 training session with personal trainer for 1 athlete to train for Iron Man (conditional spot prize for entrants taking part in Iron Man)
 
EARLY BIRD OFFER: Purchase your tickets before July 31st and be entered into a separate draw to win an OPPO A54 (5G) Mobile Phone from Three Ireland
 
For Terms & Conditions see http://www.lochdara.com/raffle4imnda/terms.html

Community Hub

Online MND Support

The IMNDA are delighted to announce a new online community hub. Our Community Hub is a safe and supportive online discussion site for people affected by Motor Neurone Disease (MND), their carers and families.

  • Looking to discuss your experiences with other people?
  • Interested in finding, receiving and providing support?
  • Want to connect with others at a time convenient for you?

Our community page allows you to post questions, share tips or advice, and interact with people with MND and their loved ones from around the country.

Registration is free and your contact details are kept confidential. You can submit your own questions and use the answers provided by the community to help support you with MND. You will find our online community hub here at http://community.imnda.ie/

Once registered, you will have access to the following services:

Forums

Our forums can be read by anyone, but in order to interact with others and post messages of your own, you will need to register with this site.

Blogs

A blog is a shared online journal where people can post diary entries about their personal experiences. We will also share entries by health professionals and those involved with research.

Connect

Reach out to people living with MND. Registered members can connect to freely discuss topics in a private and safe area.

The online community is open to people affected by Motor Neurone Disease and provides a place to connect, and find support in a safe space. For more see: http://community.imnda.ie/

IMNDA Strategic Plan 2021 – 2026

We are  delighted to launch our new Strategic Plan for the period 2021 – 2026. This plan was informed following an extensive consultation process amongst a range of key stakeholders and experts, including people living with MND, their families and caregivers, healthcare professionals, the board and staff of IMNDA, the MND research community, and our loyal donors and supporters.

Navigating your way through a complex condition such as Motor Neurone Disease can be stressful at the best of times and debilitating at worst. Throw a complex, under pressure and bureaucratic healthcare system into the mix and it becomes a minefield. 

It is our hope that this new strategic plan will form a clear roadmap for the Association to follow over the next five years, ensuring our core supports are fit for purpose and aligned with what our MND community urgently need.

Delivering person-centred care has always been, and will continue to be, the IMNDA’s number one priority.  Increased demand on our services means we are constantly faced with new challenges in terms of how we plan, develop, deliver and fund our core services. With this in mind, we have identified the following four strategic priorities, which together form the framework for this plan. 

  1. Provide practical client and caregiver-centred support on both a national and local level to ensure people affected by MND receive the best possible standard of care.
  2. Strengthen communications with all key stakeholder groups, especially families directly affected by MND, and enhance public awareness of the impact of MND through advocacy.
  3. Support, fund and communicate research into causes, management and treatment of MND amongst all key stakeholders including families affected by MND and the wider healthcare community.
  4. Invest in long term sustainable income streams in order to continue to operate a stable, transparent and accountable organisation, meeting best practice standards amongst the charity sector in Ireland.

We are confident this new plan will guide us from where we are today and ensure we stay focused on the areas we need to expand and develop in order to better serve our MND community in future years.

Amyotrophic lateral sclerosis: Not just a motor neurone disease – Dr Roisin McMackin

Amyotrophic lateral sclerosis: Not just a motor neurone disease

Author: Dr Róisín McMackin, Signal Analysis Strand, Academic Unit of Neurology, TCD

We often interchange the terms “amyotrophic lateral sclerosis” (ALS) and “motor neurone disease” (MND). This is because ALS is the most common type of MND and of course anyone who has been directly or indirectly affected by ALS will be familiar with its devastating effects on movement, which is controlled by the motor neurones. However, it’s becoming apparent that ALS is not just a motor neurone disease, and understanding ALS requires us to explore much further.

Why is ALS referred to as a Motor Neurone Disease?

The motor neurones connect your brain to your muscles, typically via a pathway wherein “upper motor neurones” connect your brain to your spinal cord or brain stem, where they pass on messages to your “lower motor neurones”, which in turn carry on the message to your muscles, telling them to do what you want. ALS is the form of MND characterised by both the upper and lower motor neurones becoming ineffective and ultimately dying away. From when it was first described by Jean-Martin Charcot in 1874, until the late 20th century, ALS was largely considered to selectively only affect these movement-controlling cells.  While this is a central, and very important component of the disease, the intense focus of ALS research on motor neurones specifically may be the reason we still do not understand a lot about ALS. For example, why do different people with ALS experience such different symptoms and why are the symptoms more severe in some people than others?

Early evidence that ALS affects the brain beyond the movement system

One of the biggest clues that ALS is not only a motor neurone disease was the recognition by neurologists that some people suffering with ALS were also developing cognitive and/or behavioural abnormalities. Cognition refers to those higher processes that we possess which enable us to act according to our will, rather than according to instincts or reflexes. This includes functions like paying attention, remembering, stopping ourselves from saying or doing things that are inappropriate and understanding the emotions of others.

Despite some reports of non-movement symptoms of ALS in the mid-20th century, some experts considered that such problems may be a reflection of the distress caused by the disease, rather than a result of additional problems in the brain caused by ALS. Additionally, because ALS can cause loss of speech and movement functions, cognitive or behavioural differences can easily go undetected due to inability to express oneself physically. However, testing systems have now been developed which allow psychiatrists, psychologists and neurologists to account for these factors when checking for cognitive or behavioural problems in those with ALS. Many research studies using such tests have now revealed that those with ALS develop psychological changes at much greater prevalence than those without ALS. In fact, approximately half of those with ALS experience some form of these non-movement symptoms. We also now know that some people with ALS experience problems with language, and a small proportion experience problems with sensation. This begs the question, why do some people with ALS have these non-movement issues, while others do not?

ALS is a motor neurone disease, but also a network disorder

The neurones of the brain and spinal cord generate our ability to act, think, learn, feel and perform all the other functions that our nervous system generates. They do this by communicating to each other with a combination of electrical and chemical signals, to generate specific patterns of brain activity. Therefore, the nervous system is really one very large, very complicated network of connected cells, within which there are specific routes, or circuits, which are responsible for generating specific functions. In order to maintain these circuits, the cells feed each other, nourishing their healthy and functioning connections. So, if for some reason a disease causes one type of neurone to become unhealthy and waste away, the cells that link to it will lose this nourishment and, to some degree, become less healthy too. As a result, the circuits required to perform specific brain functions can become disconnected and less capable of doing their jobs.

In the case of ALS, for example, when the motor neurones begin to deteriorate, other neurones which link to them, for example the ones which are involved in cognition or behaviour, will lose some of their connections. This is likely to cause them harm, such that they in turn become less able to perform their functions, resulting in some of the non-movement symptoms we see in ALS. Based on this theory of how ALS progresses, many have come to consider ALS as a disorder of neural networks, not just a motor neurone disease.

The evidence that ALS is a network disorder

My own PhD research, and research performed by much of Prof. Orla Hardiman’s team as well as other international researchers, has been dedicated to demonstrating if/where ALS affects the brain beyond the motor neurones, how it affects these areas of the brain and how this relates to the symptoms of ALS.

There are several ways to investigate the brain’s neural networks.

One is to look at the physical structure of the different connections in the brain, using methods like magnetic resonance imaging (MRI) scans. In Prof. Hardiman’s team at Trinity College Dublin, this research is led by Prof. Peter Bede. This research has extensively demonstrated structural deterioration in brain areas other than where the upper motor neurones are, and shown that the physical connections which make up many important brain networks are affected by ALS.

Another approach is to look at how the circuits in the brain are functioning, using methods like electroencephalography (EEG) or transcranial magnetic stimulation (TMS). In Prof. Hardiman’s team at Trinity College Dublin, this research is led by Prof. Bahman Nasseroleslami. This is the team that I undertook my PhD with, and within which I continue to work today as a postdoctoral fellow. Using EEG and TMS, we have found extensive evidence that areas of the brain involved in cognition and behaviour can malfunction in ALS, and the extent to which they malfunction relates to changes in cognition and behaviour that individuals with ALS experience. Importantly, we also have found evidence that those who experience more severe malfunction in the brain beyond the motor neurones experience more severe movement symptoms and faster disease progression.

What difference does it make if ALS is a network disorder or a motor neurone disease?

While our research, and other research internationally, is important for understanding ALS overall, we perform this research with the intention of making a difference to the lives of those affected as soon as possible. We hope this ‘network’ research will produce real-life benefits in the following ways:

Improving our ability to predict individual prognoses

Our limited knowledge on why each individual with ALS develops different symptoms which worsen at different rates prevents neurologists from being able to give very specific predictions about what each person will experience. This uncertainty is, of course, very distressing to those affected as well as their family and loved ones.

We know from epidemiological research that those who experience non-movement symptoms, such as cognitive and behavioural change, on average, experience more severe forms of ALS. This indicates that deterioration of the brain’s networks beyond the motor neurones is relevant to explaining why different people with ALS have very different, quite unpredictable, experiences of the disease. Our findings that changes in brain areas/connections not typically associated with movement relate to movement decline and disease progression rates support this. Further, they provide us with non-invasive- and economically-recordable measurements that can help us to predict each individual’s prognosis.

We are now researching if we can use an array of measurements which test specific brain circuits required for movement, sensation, cognition, behaviour and language in order to “see” what pattern of networks are affected in each individual with ALS and therefore predict how each diagnosed individual will experience ALS. If successful, individuals diagnosed with ALS, or even those predicted to get ALS in future, could undergo these tests in the hospital, enabling their doctor to inform them much more specifically about what they can expect to happen to them.

Improving ability to detect useful new drug therapies

Our currently limited ability to predict ALS symptoms is not only distressing for those affected, but it is also limiting the ability of drug companies to detect if potential therapies are working.

Consider a hypothetical clinical trial where 20 people with ALS are recruited. 10 people are given the drug and 10 people are given a placebo, something that looks like the drug but is known to have no effect. This “placebo-controlled” trial design is used so that the drug company can tell if the drug works without the results being caused by the process of receiving a drug (and not the drug itself), known as ‘the placebo effect’. Suppose the test of whether the drug works or not is if those who get the real drug show less decline in their motor function than those receiving the placebo.

Now consider that we can’t predict how those 20 people will be affected by ALS. Say 7 people progress very rapidly, while 13 progress very slowly, and those 7 rapid progressing individuals are all, by chance, assigned to the real drug group. The group given the drug will now be found to show more decline in their movement functions than the placebo group. Therefore, the drug will be found not to be therapeutic (even if it is therapeutic) and may no longer be investigated. However, this is not the case, this is purely due to the unpredictable variation in ALS symptoms not being accounted for.

Currently, drug companies try to avoid this happening by only recruiting people who meet very stringent medical criteria. They hope this will mean that all recruits will have a more similar ALS progression rate that won’t affect the drug trial findings. This, however, may not be successful. Additionally, it means that many ALS patients who want to take part in clinical trials are not allowed to.

If we are able to develop a set of measurements which allow us to more accurately predict how each person will be affected by ALS, these tests could be taken in each person who wants to take part in a drug trial. The volunteers could then be divided up in such a way that the real drug- and placebo drug-treated groups contain matching proportions of those with similar prognoses. As a result, many more ALS patients would be able to participate in clinical trials, and those clinical trials would be less prone to not detecting useful drug therapies.

Overall, understanding ALS as a network disorder has the potential to improve the quality of life of those affected by ALS, and improve our ability to find new ALS therapies. Our progress to date would not have been possible without the help of all those with ALS and their friends and family who have participated in our research. We are so grateful for your time and interest in this research and would be delighted to hear from anyone, with or without a diagnosis of ALS, that would like to take part in our studies to help us move forward in this research. If you’d like to hear more information about our results so far or taking part in future research, please email me at mcmackr@tcd.ie or contact me by call/text at 0894888697.

 

Drink Tea for MND 2021!

This June, get ready for a cup of something really special!

June 21st is Global Motor Neurone Disease Awareness Day. Every year all over Ireland homes and businesses of all sizes put the kettle on and to do something really special to raise much needed funds for families living with Motor Neurone Disease.

In 2020, for the first time, your tea parties took place online… and it was our most successful Drink Tea for MND ever raising over €250,000 for families living with Motor Neurone Disease!!!

Now that’s what we call a strong cup of tea!

This year we want you to help us make an even bigger difference for families living with MND. Please join us on put the kettle on! 

Click Here to Register!

Chief Executive Officer Job Vacancy

The IMNDA is looking to fill the role of Chief Executive Officer

About the Organisation

The Irish Motor Neurone Disease Association (IMNDA) supports people living with Motor Neurone Disease (MND), their families and carers by providing services and supports throughout Ireland including home visits by specialist MND nurses and the supply of specialised equipment on loan. The IMNDA also represents and advocates for people living with MND, their families and carers at a national level.

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Coping with Stress as a Person with MND

“To say my world was turned upside-down that day in clinic is an understatement.  I was expecting bad news, but the diagnosis came as a terrible shock.  Some days, even now, I stop and ask myself has this actually happened,” ~ Person with MND

A diagnosis of motor neurone disease is life changing.  For many people, it comes as a devastating blow, both to the person diagnosed and their loved ones.  It’s normal to feel very distressed around the time of diagnosis.  It brings shock and often profound sadness.  For many, it comes at a time in life when they were preparing to enjoy retirement.  For others, it arrives when they are in the middle of their working life and raising young families.  Grief at the loss of the future you thought was ahead can hit like a tidal wave. (more…)

Living Well – HSE Support for Caregivers

Are you a caregiver?

Building Better Caregivers: classes are highly participatory, where mutual support and success build the participants’ confidence in their ability to manage their caregiving tasks and maintain a fulfilling life (more…)