IMNDA launches ‘By Your Side’: A New Five-Year Strategy for People Living with MND and their Families
The Irish Motor Neurone Disease Association (IMNDA) is today launching By Your Side 2026–2030, a new five-year strategy designed to strengthen support for people living with Motor Neurone Disease (MND) and their families, improve co-ordination of care, and increase advocacy for better services across Ireland.
The strategy is launching at IMNDA’s Global Day event in Dublin on 4th June, attended by people living with MND, family members, healthcare professionals, supporters and stakeholders from across the country.
Developed following extensive consultation with people living with MND, caregivers, bereaved families, healthcare professionals, staff and volunteers, the strategy is built around a central commitment:
No person or family affected by MND should feel alone.
It recognises that people living with MND and their families require co-ordinated, compassionate and continuous support that adapts as needs change throughout the course of the illness because no two MND journeys are the same.
Consultation feedback highlighted the challenges many families face in navigating fragmented health and social care services, alongside the emotional, practical and financial pressures of living with MND. Families and caregivers consistently described the need for clearer navigation, more joined-up supports, and stronger continuity of care throughout the MND journey. Bereaved families also spoke about the importance of ongoing connection and support after the loss of a loved one.
Over the next five years, IMNDA will focus on strengthening person-centred supports, improving care co-ordination, expanding support for families and caregivers, and enhancing support at key stages of the MND journey, including diagnosis, progression, end-of-life care and bereavement.
The strategy also places a stronger emphasis on national advocacy and awareness, with IMNDA aiming to increase understanding of MND, strengthen education for healthcare professionals, and work towards more equitable access to services across Ireland.
Speaking at the launch, IMNDA’s CEO Kevin Burn said:
"Everything we heard during our consultation came back to one central message: people want to know someone is there for them. They want support that is responsive, joined-up and compassionate. ‘By Your Side’ is our commitment to standing with people living with MND and their families at every step of the journey."
As demand for services continues to grow, IMNDA will also invest in strengthening its organisational capacity, fundraising, governance, communications and systems to ensure services remain sustainable into the future.
The strategy also recognises the vital role of supporters, donors, volunteers and corporate partners whose generosity enables IMNDA to deliver services to people and families affected by MND across Ireland.
Kevin Burn added:
"By Your Side is more than the name of a strategy. It is a commitment to every person living with MND and every family supporting them. It is a promise that IMNDA will continue to stand beside them, advocate for them and support them throughout the full journey of MND."
The full strategic plan is now available to view, please click on the button below.
