A man walking outdoors with two women in wheelchairs, smiling and enjoying a sunny day in a park with trees and buildings in the background.
Two women holding signs about heel pricks and disease screening in Ireland and Europe, standing outdoors in front of a building with multiple windows.
Three people standing together at a Muscular Dystrophy Ireland event, with a green and white backdrop displaying the organization’s logo and words related to youth service, clinic liaison, advocacy, and information line.
Group of six people, including a young man in a wheelchair, standing and sitting outside a building with glass doors, smiling and posing for a photo during a marathon event, wearing athletic apparel and race bibs.
Group of five people, including three in wheelchairs, in a room with green and orange decor and balloons. Two women stand behind two seated individuals with wheelchairs, all smiling for a photo. The background has words like 'Home from Home,' 'Transi
A group of fifteen people, including children and adults, posing outdoors in front of a beige wall with greenery and trees behind them. They are arranged mostly standing with some sitting. The sky above is partly cloudy.
Group photo of diverse individuals, including several in wheelchairs, in a conference room or similar setting.
A white disability van with a wheelchair lift in a parking lot, surrounded by other parked vans and vehicles, with houses and trees in the background.
A young girl sitting in a red Ferrari convertible, smiling, with other people and children in the background outdoors on a sunny day.
Group of six people standing in front of a colorful butterfly mural on a stone wall, with two of the women in wheelchairs and one person on a mobility scooter.

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MDI’s Counselling and  Information Advocacy service formed a key part of the support Claire Ellis received  after her diagnosis 
MDI’s Counselling and  Information Advocacy service formed a key part of the support Claire Ellis received  after her diagnosis 

My name is Claire and I was diagnosed with the extremely rare, miyoshi distal myopathy last year. Needless to say it came as a shock initially, but then the range of emotions from fear, disbelief, anger, sadness, and especially the isolation of such a diagnosis, felt overwhelming. None of the medical professionals I spoke to around that time had ever heard of my type of MD, and as a single woman in her forties, this further compounded my isolation and distress. 

May is Friedreich's Ataxia Awareness Month.
May is Friedreich's Ataxia Awareness Month.

We're thinking of everyone in Ireland living with FA. Your strength, resilience, and spirit inspire us every day.

We're back at Barretstown!
We're back at Barretstown!

We're back at Barretstown! This weekend marks the third year of our Family Camp partnership, and what a morning it's been welcoming our incredible MDI families through the gates. MDI CEO AlanB reathnach kicked things off by welcoming everyone and setting the tone for a magical weekend ahead — kayaking, horse riding, arts & crafts, music, and so much more.

Please show your support for our Campaign for Equal Access to Treatments for Adults Living with Spinal Muscular Atrophy (SMA) at this crucial time! 
Please show your support for our Campaign for Equal Access to Treatments for Adults Living with Spinal Muscular Atrophy (SMA) at this crucial time! 

Listen to Aoife’s story. She can’t get treatment due to her age. For every day that goes by without access to treatment, she experiences deterioration and a loss of muscle function.  

MDI member and vice-chairperson Patrick Flanagan, spoke to Virgin Media News about the Cost of Disability,
MDI member and vice-chairperson Patrick Flanagan, spoke to Virgin Media News about the Cost of Disability,

MDI member and vice-chairperson Patrick, spoke to Virgin Media News about the Cost of Disability yesterday, what he believes are the key issues and solutions needed from policy makers, ahead of the governments Cost of Disability Summit which took place today.

This week is Mental Health Awareness Week!
This week is Mental Health Awareness Week!

Living with a neuromuscular condition brings its own emotional and psychological challenges, and we know that mental health is just as important as physical health.

Spotlight on members of our community living with neuromuscular conditions: Simon Hogan
Spotlight on members of our community living with neuromuscular conditions: Simon Hogan

I am Simon Hogan, from Waterford. I was a firefighter and had to give it up due to my diagnosis. In the spring of 2009, I was required to get the hepatitis vaccine for work. I started getting ill a couple of months after the vaccine started, getting sinus problems I never had before. In December of 2009, I started getting chest pains, indigestion, and heart tests were carried out, but I got no answers.

Our New Diagnosis Support Line Is Live
Our New Diagnosis Support Line Is Live

Receiving a new diagnosis can be an overwhelming time for individuals and families. To support members during this early stage, MDI has launched a dedicated New Diagnosis Support Line.

We’re delighted at MDI to share the very first experience from the Jimmy Murray Centre Stage Fund!
We’re delighted at MDI to share the very first experience from the Jimmy Murray Centre Stage Fund!

This is a fantastic opportunity to enjoy an evening at one of Dublin’s top theatres, as part of a fund created to honour our dear friend and colleague, Jimmy. His love of getting out, experiencing life, and never letting his disability keep him waiting in the wings continues to inspire us.

New Research Reveals Urgent Gaps in Neurology Services Across Ireland
New Research Reveals Urgent Gaps in Neurology Services Across Ireland

We are pleased to share newly published research from the Neurological Alliance of Ireland (NAI), highlighting significant gaps in neurology services ten years after the publication of the National Model of Care for Neurology Services.

The Hubert Assistive Technology Programme Monthly Update April 2026
The Hubert Assistive Technology Programme Monthly Update April 2026

The Hubert Assistive Technology support service offers individualised support to members with a neuromuscular condition by providing them with valuable information, support, and advocacy on how to secure smart technologies that can assist members to improve challenges faced in their everyday lives. Our aim is to create a supportive environment where individuals with a neuromuscular condition can thrive and achieve their full potential. People with disabilities face a variety of challenges, be it at home, in education, employment, healthcare, social isolation, independent living, and funding, we want to assist members in getting assistive technology to help them with these areas. We will contact you to follow up.

MDI Ollie Hickey Fund is Now Open for Applications
MDI Ollie Hickey Fund is Now Open for Applications

We’re pleased to announce that the Ollie Hickey Fund is now open for applications and will remain open until 31st May 2026. The Ollie Hickey Fund is an important part of MDI’s commitment to supporting members living with neuromuscular conditions to access opportunities that promote independence, participation, and inclusion.

GO TO NEWS SECTION

  • Our vision

    MDI envisages an Ireland that enables people with neuromuscular conditions to fully participate in society and reach their full potential.

  • Our mission

    Using a member-centred approach, we provide information and support to people with neuromuscular conditions and their families through a range of support services. Advocating for services and entitlements for members; Educating and informing society about neuromuscular conditions and supporting researchers and clinicians to carry ourt quality research into neuromuscular conditions.

  • Our values

    1. Respect and empathy

    We seek to build relationships based on respect and empathy.

  • Our values

    2. Transparency and integrity

    We carry out all our work to the highest standards, underpinned by honesty, accountability and consistency.

  • Our values

    3. Equality and fairness

    We are committed to equality and fairness and to ensuring the right to equal access to services based on the needs of the individual.

  • Our values

    4. Inclusiveness

    We strive to be inclusive, valuing and respectful of diversity.

  • Our values

    5. Personal empowerment

    We believe personal empowerment is about being able to make choices and having a voice.

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