Vote for MDI in the AIB Community €1M Fund!
Please complete the nomination form between now and 19th June at 5pm to nominate MDI to receive part of AIB's Community €1M Fund to support our services.
Sharing Jake’s experience, Elaine O’Dwyer highlights the value of connection and community through MDI’s Youth Service
“MDI’s youth service and youth clubs have meant so much to our family. Through the service, our 12-year-old son has had the opportunity to build friendships and grow in confidence.”
The Hubert Assistive Technology Programme Monthly Update May 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 Family Camp 2026: Another Magical Weekend!
On behalf of the MDI Youth Team, we just want to say a big thank you to everyone for joining MDI at the Barretstown family camp and making it a fantastic weekend.
Your Rare Disease Journey Matters — Share It in 30 Minutes with Rare Diseases Ireland
Rare Diseases Ireland is testing a new questionnaire designed specifically to capture the healthcare experiences of people living with rare diseases and their caregivers. The questionnaire was built specifically for rare diseases - covering the things standard questionnaires always miss, like how long it took to get a diagnosis, or what it's like coordinating care across multiple specialists.
Take part in #MakeWayDay26 on Friday 29 May 2026
Take part in #MakeWayDay26 on Friday 29 May 2026 by posting photos of everyday obstructions in public spaces. Led by the Disability Federation of Ireland, this campaign raises awareness of barriers faced by people with disabilities and how small changes can make shared spaces more accessible. MDI is proud to support the campaign as a member organisation.
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 Emer’s story. She can’t get treatments due to her age, and she explains our campaign for equal access to treatments for SMA adults in Ireland.
Do you hear the people sing? Well… you could be - at Les Misérables in the 3Arena on 6th June.
We’re delighted to share the next experience from the Jimmy Murray Centre Stage Fund. We have 2 tickets (1 MDI member + 1 guest) available for the spectacular production of Les Misérables at the 3Arena on 6th June.
James Brosnan Scholarship – Foundations in AT Course 2027
Enable Ireland are inviting Assistive Technology users or prospective users who wish to upskill in this area to apply for the James Brosnan Scholarship 2027. This scholarship will enable the successful applicant to register for the Foundations in Assistive Technology course, accredited by Technological University, Dublin (TU Dublin), free of charge. It’s a Level 6 course, with 5 ECTs (European Credit Transfers).
Today is Global Accessibility Awareness Day
For people living with neuromuscular conditions, accessibility is everything, from ramps and adapted transport to digital tools and assistive technology.
It's National Volunteering Week — Could You Be One of Our Volunteers?
It's National Volunteering Week and we couldn't let it pass without saying a huge thank you to the incredible volunteers who give their time to MDI and our community. 🙏💚
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.
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! 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!
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, 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!
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
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
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!
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.