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.
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 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
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.
EMA Committee Backs Novartis Gene Therapy Itvisma for SMA Patients Aged Two and Over
On 23 April 2026, the European Medicines Agency (EMA) Committee for Medicinal Products for Human Use (CHMP) issued a positive opinion for Itvisma, a gene therapy for people aged 2 years and older living with spinal muscular atrophy (SMA).
Remembering Adrian Walsh and the Founding Members of Muscular Dystrophy Ireland
On this month's mind, we pause to remember Adrian and to honour the extraordinary life he gave in service to others. His vision helped bring MDI into being, and his influence has touched the lives of countless families across Ireland in the decades since.
![[The SundayTimes] ‘We taught Kajus to walk, now we watch as he loses that ability’](https://images.squarespace-cdn.com/content/v1/63c138561d3afd3c27c17d5d/a416be7e-e6e8-4802-8efa-935492403d4b/Sunday+Times_05-04-2026_1RN_p2.jpeg)
[The SundayTimes] ‘We taught Kajus to walk, now we watch as he loses that ability’
The mother of a ten-year-old boy with Duchenne muscular dystrophy (DMD) is appealing to the HSE to fast-track access to a potentially life-altering drug, saying "one of the hardest parts" of the disease has been watching her only child lose his ability to walk.
![[Watch] MDI's FSHD Community Gathering: Connection, Knowledge and Community](https://images.squarespace-cdn.com/content/v1/63c138561d3afd3c27c17d5d/1776943523864-4KTYQ61HEGOF78IBILCI/FSHD+Video+Gathering+Title.png)
[Watch] MDI's FSHD Community Gathering: Connection, Knowledge and Community
MDI hosted an online FSHD Community Gathering in October 2025, bringing together people living with facioscapulohumeral muscular dystrophy (FSHD) and their families for a half day of learning, discussion and connection. This event brought together a rich mix of perspectives, combining clinical insight, advocacy, and lived experience within the FSHD community.
"The Value of Collaboration and the Power of Listening": MDI and Beaumont Hospital Deliver Changing Places Facility
MDI have been engaging with Beaumont on ensuring fully accessible facilities are available to our members. This has resulted in the offical opening of a new Changing Places facility in the Outpatient Department at Beaumont Hospital. The new facility marks a significant step forward in the provision of Changing Places Toilets in Ireland in a hospital setting and it represents a vital development in promoting dignity, inclusion and accessibility for people with complex needs in Beaumont Hospital.
Emergency Disability Payment Campaign Update: A Message From DFI
There is deep disappointment, and growing anger that no targeted supports have been implemented specifically for the disabled community, particularly from a government that has identified disability as one of its top priorities.
Meet the MDI Siblings Programme
We're proud to share our dedicated Siblings Programme webpage — a space created for the brothers and sisters who grow up alongside a loved one with muscular dystrophy
