“There are nearly 490 people living with MND in Ireland — and every one of them deserves support.”
On Disability Matters, John Comiskey spoke with Naomi Fitzgibbon, Director of Nursing Services at the Irish Motor Neurone Disease Association (IMNDA), about one of the most complex and devastating neurological conditions — and the vital supports available across Ireland.
Motor neurone disease (MND) is a progressive neurological condition that affects the motor neurons responsible for movement, speech, swallowing and breathing. Over time, these neurons stop working.
“It is progressive,” Naomi explained. “For some people, symptoms develop slowly over years. For others, the progression can be faster. But unfortunately, there is currently no cure — and only limited treatments that slow the disease rather than stop it.”
A Complex and Individual Journey
No two people with MND are the same.
Some may first notice weakness in a leg or foot drop. Others experience weakness in their hands or arms. For some, early signs include slurred speech, difficulty swallowing, or changes in breathing. Fatigue can become overwhelming.
“There are nearly 490 people living with motor neurone disease in Ireland right now,” Naomi shared. “Around 70% are men, and it is more common in people over 60 — though younger people can also be diagnosed.”
Diagnosis can take time. Many individuals are referred between different specialists before receiving clarity. While the confirmation can bring relief after uncertainty, the diagnosis itself is life-changing.
“It is absolutely devastating,” Naomi said. “But people are extraordinarily resilient. Once they understand what they are dealing with, they are determined to live as well as they can.”
Supporting the Whole Family
Founded 40 years ago, IMNDA was established by people living with MND who recognised the absence of community support. Today, the organisation provides nationwide services including:
▪️ A specialist nursing team
▪️ Equipment provision
▪️ Counselling for patients and families
▪️ Caregiver training programmes
▪️ Home care and night nursing grants
▪️ Holistic therapy grants
▪️ Travel grants for hospital appointments
▪️ Recharge grants for short respite breaks
These services are largely funded by public support. Only around 10% of IMNDA’s funding comes from the government.
The association also offers a monthly Loss and Grief Support Programme, recognising that families need continued care and connection even after a loved one has passed.
“This is not just an individual diagnosis,” Naomi emphasised. “It affects the entire family. We are here for all of them.”
Research and Hope
Ireland is at the forefront of international MND research, led by Professor Orla Hardiman and her team in Beaumont Hospital. While breakthroughs remain complex and challenging due to the different types of MND, progress continues.
“It would be phenomenal to find effective treatments,” Naomi said. “Research is critical — and we are hopeful.”
Living the Best Life Possible
Despite the progression of MND, many individuals remain focused on quality of life — staying at home, maintaining independence where possible, and spending meaningful time with loved ones.
“Our role,” Naomi explained, “is to keep people safe, comfortable and supported — and to ensure they never feel alone.”
How to Connect
If you or someone you know has been diagnosed with motor neurone disease, early connection is key.
🌐 Website: www.imnda.ie
📞 Contact details available via the website
“Even if it’s just a phone call,” Naomi said, “reach out. We will help.”
This interview aired on Disability Matters on 92.5 Phoenix FM, a programme produced by Blanchardstown Centre for Independent Living (BCIL).
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Read more: Supporting Every Step: Understanding Motor Neurone Disease with the IMNDA