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, 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.

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.

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.

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.

We’re pleased to announce that the Ollie Hickey Fund is now open for applications and will remain open until 31^st 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.

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).

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 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.

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.