Reforming the Disability Act 2005: A Once-in-a-Generation Opportunity to Advance Disability Rights
We wish to share Disability Federation of Ireland’s (DFI) summary of the key recommendations in their recent submission to the review of the Disability Act 2005. MDI, as a member organisation of DFI, contributed to the submission, drawing on a survey of MDI members and issues and experiences regularly reported to MDI’s Advocacy and Support services.
Givinostat: An outstanding achievement for CHI and Irish families
Children’s Health Ireland (CHI) has been recognised by Italfarmaco, the manufacturer of Givinostat, for achieving the fastest turnaround time in Europe between the treatment becoming available in Ireland and its first prescription This is a significant achievement, made possible through the determination of families who campaigned for access to the treatment, the commitment of the CHI multidisciplinary team, and collaboration with Muscular Dystrophy Ireland (MDI).
World Occupational Therapy Day: Thank You to Our OTs
Today, 27 October, is World Occupational Therapy Day, and at Muscular Dystrophy Ireland we want to recognise the occupational therapists who make such a difference to people living with neuromuscular conditions.
What’s in store at MDI’s National Conference? Plus, win a getaway!
Our National Conference is just around the corner on 21 November! In this update, we’re highlighting our line-up of excellent speakers, along with a special chance to win a getaway when you book your place by 28 October. Take a look at what’s in store and join us for MDI’s National Conference 2026
MDI CEO Alan Breathnach reports from the All-Island Biobank Symposium at Queen’s University, Belfast.
I was delighted to attend the all Island Biobank symposium today. Establishing a dedicated biobank for muscular dystrophies and related neuromuscular disorders in Ireland could help in bridging gaps in our current medical research infrastructure.
Navigating Third-Level Education: Information and Support
MDI are delighted to inform you of our upcoming webinar, Navigating Third-Level Education: Information and Support.
This webinar will be hosted online by MDI and will include presentations from AHEAD, and MDI members, Dr. Aoife McNicholl and Matthew Patrick Sharkey as well as from MDI.
Are you thinking about your post school options or are you already in college wondering about employment opportunities when you graduate? This webinar will be aimed at students and prospective students living with muscular dystrophy and related neuromuscular conditions, as well as their parents and families.
MDI Enhances Accessibility with Updated Wheelchair Accessible Vehicle Service in the Southern Region
Muscular Dystrophy Ireland (MDI) is delighted to announce an update to its wheelchair accessible loan vehicle service for members in the Southern Region. As part of MDI's ongoing commitment to supporting independence, inclusion, and quality of life for people living with neuromuscular conditions, the previous Nissan NV400 has now been replaced with a Kia Sedona Wheelchair Accessible Vehicle (WAV).
Exploring Neuromuscular Research in Ireland: Trends, Gaps & Opportunities
Muscular Dystrophy Ireland (MDI) is pleased to share our new research landscape review, Neuromuscular Research in Ireland: Trends, Gaps & Opportunities (1990–2025), together with an Executive Summary of its key findings.
Transport for Ireland (TFI) new “Ramp Please” JAM Card for bus passengers
In collaboration with the Now Group, Transport for Ireland (TFI) has introduced a new “Ramp Please” JAM Card for bus passengers. The card enables customers to discreetly let the driver know that they require the ramp to be lowered, without having to make a verbal request. This simple addition helps make bus travel more accessible, inclusive and comfortable for passengers who may face communication barriers or who prefer a non-verbal way to communicate their needs.
Webinar: Supporting Post Primary School Students with Muscular Dystrophy and Related Neuromuscular Conditions
We're thrilled to continue our collaboration with Education Support Centres Ireland to host a WEBINAR FOR POST PRIMARY SCHOOL STAFF on 5th of November!
Book now for MDI National Conference 2026
Be part of the conversation shaping our community’s future! Join us on Saturday 21 November in Croke Park, Dublin, for MDI’s National Conference, Shared Voices, Shared Strength.
[DFI] Supporting lived experience and voluntary organisation engagement in the National Neuro-Rehabilitation Strategy
Disability Federation of Ireland (DFI), Neurological Alliance of Ireland (NAI) and the HSE are partnering on a new project. Its aim is to make sure that people with lived experience, and the voluntary organisations that support them, have a real say in how the National Neuro-Rehabilitation Strategy is put into practice.
MDI at the Irish Presidency Conference: Closing the Gap Between Approval and Access
I was delighted to receive an invite from the Minister of Health Jennifer Carol MacNeil to attend the Irish Presidency Conference on Clinical Trials and Medicine Access today. The conference is essentially about how Europe can make the journey from medical research to patient access to medicines faster, more effective and more sustainable. Looking at why there can be a significant gaps between a medicine being developed/approved and patients actually getting access to it across Europe!!
€500 Cost of Disability payment falls far short of the weekly costs disabled people face
We wish to share Disability Federation (DFI) of Ireland's response to Budget 2027 announcement of a Cost of Disability payment. As a member of Disability Federation Ireland, Muscular Dystrophy Ireland contributes to collective advocacy to advance the rights of disabled people.
ExWell Medical: Looking for a safe, supportive way to stay active?
ExWell Medical is a not-for-profit organisation running medically supervised exercise classes for people living with long-term conditions, including neuromuscular conditions. Classes are led by trained instructors and combine gentle aerobic, strength, core and balance work in a supportive, sociable group setting. ExWell has centres across Dublin, Leinster, Munster and Connacht, plus online classes and weekly Zoom health talks. To join, you'll need a referral from your GP or another healthcare professional.
Register Now: Five Expert Voices, One Evening: Our Assistive Technology Webinar on 14th October.
Join us online on 14th October at 7pm for our Assistive Technology Information Webinar. Victoria Geaney from Tus Nua Occupational Therapy will discuss power mobility and the MDI Wellness Programme. Laura from AT Superstore will demo the latest devices. Niamh Bridges from Tobii Dynavox will cover eye-gaze technology for communication and independence. MDI member Catherine Keegan will share her family's experience of living with CMT. Cathy Wright from Citizens Information will explain the funding and grants available for AT. Our online peer support workshop follows on 19th October. Email tania@mdi.ie to join.
Assistive Technology News Monthly: October 2026
October's Assistive Technology Update is here. Join our free online information webinar on Tuesday 14th October at 7pm, with Niamh Bridges, AAC Trainer with Tobii Dynavox, on eye-gaze technology for communication and independence; MDI member Catherine Keegan on how assistive tech has supported her family living with CMT; and Cathy Wright from Citizens Information on funding and grants for AT. Our online peer support workshop also runs on 19th October. This month's resources include our webinar recordings on accessibility features in Windows, iOS and Android, the Quha Zono head mouse, the BIGtrack 2 trackball, the Flexi wheelchair phone holder, and simple-control music and TV devices. We also share a step-by-step guide from one of our members on setting up a PC to power on with a switch.
Kinship Care Week 2026: Celebrating the families who keep children connected
This week Ireland marks its third Kinship Care Week, part of Global Kinship Care Week. Led by Kinship Care Ireland, a national programme of the charity Treoir, the week celebrates the grandparents, relatives and close family friends who step in to raise a child.
Kinship care is when a child is raised full-time by grandparents, relatives or close family friends because their parents are unable to care for them. It keeps children connected to their family, community and identity. Between 10,000 and 12,000 children in Ireland are growing up in kinship care. Without these carers, many of those children would need to enter State care. This year's theme is simple: #KinshipCareCounts.
MDI Supports New Research into the Transition to Adulthood for Young People with DMD
Muscular Dystrophy Ireland is delighted to be co-funding a new research project aimed at improving support for young people with Duchenne Muscular Dystrophy as they transition to adulthood.
MDI School Awareness Programme
MDI School Awareness Programme
Having an understanding of Muscular Dystrophy and related neuromuscular conditions within the school setting is vital for creating a supportive and inclusive experience for young pupils and to ensure they are fully included in all aspects of school life.