Advocacy

Campaigning on Your Behalf

The IMNDA is committed to raising awareness and campaigning on issues and services for over 400 Irish people living with Motor Neurone Disease in Ireland. We are members of organisations such as the International Alliance of ALS/ MND, NAI – Neurological Alliance of Ireland and DFI – Disability Federation of Ireland who help us to campaign on issues that affect you.

Your experiences and those of others living with MND mean that we have first-hand knowledge of the reality of the disease.  We use this knowledge to speak out on your behalf and influence decision-makers at local and national level.  This ranges from communicating with the HSE and the Social and Voluntary sector in Dail Eireann, to ensuring that you are able to claim the allowances to which you are entitled.

The national IMNDA office produces a newsletter and organises an annual general meeting where people affected by MND offer each other emotional and practical support and exchange information.  Local fundraising events and activities also take place.

To find out more about the IMNDA and how we can help you, or to get your issues heard contact us by emailing info@imnda.ie  or Freefone 1800 403 403.

Help the IMNDA secure more funding

Did you know that 86% of our funding comes from the generosity of the public?

Motor Neurone Disease (MND) is a devastating diagnosis;  life-changing and life-limiting. Right now, the IMNDA is supporting 470+ people living with MND in Ireland, but we need more support from Government. As we speak, 86% of our funding comes from the generosity of the public through donations and fundraisers. It is not sustainable in the long-term and we are calling on the Department of Health to increase the funding provided to the IMNDA.

You can help.

As part of our Pre-Budget Submission for 2025, the IMNDA is calling on the Government to urgently fund specialist services and supports for people living with MND. To make our voices louder, we’ve launched a public petition — and we need your signature today.

Please add your signature at the following link, or click the button below, where you will also find more information.

Recognise MND: Fund Urgent Care

Your voice matters. By signing and sharing this petition, you are standing in solidarity with every person and family impacted by MND in Ireland. The Budget is approaching so now is the time to act.

Use Your Voice so others can be heard

June marked the #Voice4MND campaign, this year we are not asking you to stay silent, instead, we want you to use your voice.

So we’re asking, if you lost your voice tomorrow, what would you miss the most?

Motor Neurone Disease often takes away the ability to speak before anything else. In an IMNDA survey that was carried out amongst people living with MND last year, one person told us:

“My speech was too deteriorated by the time I was diagnosed. Luckily, my sister donated her voice.”

This #Voice4MND month, we want to hear from you. Please take our short survey, it will only take few minutes to complete, you can particpate by clicking on the button below. The answers that you provide to us will help raise awareness.

For our #Voice4MND campaign, we encourage you to please continue to donate to help those living with MND. Your donations will give a voice to those who have lost theirs. Please donate today, you can do this by clicking on the button below. 

Thank you all for your support on this occasion. 

New Video Campaign to Highlight Challenges Faced by People Living with MND

In 2024, the IMNDA carried out a survey amongst people living with MND to find out how the condition affects their everyday lives. 75% of people with MND who experience voice deterioration say confidence affected. 96% believe there needs to be more awareness among the general public about voice deterioration being a symptom.

As a result of this survey, the Irish Motor Neurone Disease Association (IMNDA) has announced the launch of a new awareness video campaign in collaboration with CB Media. The series of powerful and personal videos sheds light on the everyday challenges faced by people living with Motor Neurone Disease (MND) in Ireland. The project aims to raise awareness about the struggles people with MND endure and how society can offer more support and understanding.

The videos focus on the real-life personal stories of individuals living with MND; Andres Estevez Guersanik from Dublin, Eileen Butler from Co Meath, and John Daly from Dublin, who has since sadly passed away. Filmed in their own homes, these videos offer an intimate view into their lives, featuring conversations with their families and their MND nurse from the IMNDA. Each story brings to light the emotional and practical challenges the family faces daily and outlines how we can do more to support those with MND while at the same time, shows an appreciation as to how far society has already come and the support offered by many.

The video project comes in the wake of a survey conducted earlier this year by the IMNDA, which revealed the significant impact of voice deterioration—a common symptom of MND—on social interactions and quality of life. According to the survey, 75% of participants reported that losing the ability to speak clearly has affected their confidence, with almost half (47%) stating social situations can be uncomfortable and a further 42% saying they avoid social interactions altogether as a result. These findings highlight the urgent need for greater awareness and sensitivity toward people with MND.

The IMNDA hopes that this project will prompt viewers to reflect on how they can make a difference in the lives of people living with MND, from offering practical support to simply being more understanding in everyday situations.