[Press Release] Minister for Health Speaks at Muscular Dystrophy Ireland National Conference at Croke Park
Minister for Health Jennifer MacNeill
Muscular Dystrophy Ireland (MDI) held its national conference today at Croke Park, with Minister for Health Jennifer MacNeill officially speaking at the event. The conference brought together people living with muscular dystrophy and related neuromuscular conditions, along with their families, clinicians, researchers, and disability advocates from across the country.
Centred on the theme Connection, this year’s conference created space for attendees to share knowledge and experiences, strengthen community ties, and participate in expert-led workshops focused on living well with neuromuscular conditions.
According to Bindu Nair, Chairperson of MDI, the conference “presents an opportunity for meaningful connection among our community of members, staff, and experts in the field of neuromuscular conditions. It also allows us to spotlight our supports, advocacy efforts and research initiatives. I’m delighted Minister MacNeill is here to support our mission.”
Speaking at the event, Minister Carroll MacNeill said:
“Our new National Rare Disease Strategy is designed to enhance services and supports for the estimated 300,000 people living with a rare disease and is supported by an initial investment of €6.5 million.”
“This investment is helping to accelerate progress and deliver meaningful change for people living with rare diseases, including those with muscular dystrophy and their families. While this marks a significant step forward, we recognise that further investment will be needed to achieve the strategy’s long-term goals. I also acknowledge that many people living with neuromuscular conditions continue to face serious challenges, and I want to reassure you of my commitment to delivering sustainable improvements and real, lasting change for people with muscular dystrophy.”
The Minister presented the MDI Outstanding Volunteer of the Year Award to Paddy and Claire Hickey, recognising their incredible awareness-raising and fundraising efforts that created the Ollie Hickey Fund.
The Fund supports MDI members living with neuromuscular conditions by financing activities and equipment that enhance quality of life and participation in society. It has funded home adaptations, accessible holidays, tickets to football matches, and access to physical, dietetic, and occupational therapy programmes. This year, the fund allowed MDI to obtain a marathon chair which was used by a young man with a neuromuscular condition to take part in the Dublin City Marathon.
Keynote speeches were delivered by Dr Jeff Preston, Associate Professor and Chair of Disability Studies, King's University College, Ontario, and disability-rights advocate, Senator Tom Clonan.
Dr Preston shared his reflections on the theme of Connection, commenting:
“Now, perhaps more than at any point in human history, are disabled people gathering to fight for equality, access, and inclusion. Disability incites connection, draws us together, in our fight for disability rights and access.”
The programme also featured a panel discussion with leading clinicians and researchers – Professors Sinéad Murphy, Orla Hardiman, Imran Sulaiman, and Dr Reghan Foley – and participatory workshops led by Dr Laura Gallagher, Clinical Neuropsychologist, and Dr Aoife McNicholl, Assistant Professor of Psychology at DCU.
With more than 150 participants, the gathering underscored MDI’s commitment to advancing a future where true connection flourishes – one in which every person has the supports, health care, and accessible environments they need to make meaningful choices about their own lives.
About Muscular Dystrophy Ireland
MDI – founded in 1972 – is a voluntary organisation providing nationwide support to children and adults living with muscular dystrophy and related neuromuscular conditions and to their families. MDI offers practical support, information, advocacy, and contributes to research aimed at improving quality of life and developing treatments.
Media Contact:
Rebecca Ivory
rebecca@mdi.ie
086 823 6826