MDI Awarded RTÉ Toy Show Grant to Support Barretstown Family Camp 2027
Muscular Dystrophy Ireland is delighted to be one of over 170 organisations benefitting from the latest round of RTÉ Toy Show Grants, made possible by the generosity of the annual television spectacle. Community Foundation Ireland announced grants this week, working to turn viewers' donations into on-the-ground actions that benefit children and their families.
MDI supports Disability Federation of Ireland’s Pre-Budget 2027 Submission
Budget 2027 is a test of Government’s promise to disabled people. It’s time to make sure they deliver. As one of its member organisations, MDI supports Disability Federation of Ireland (DFI) Pre-Budget Submission 2027, “The least we can expect”. The National Human Rights Strategy for Disabled People is now published, and Budget 2027 is the first real test of whether Government will deliver across every Department
MDI National Conference – Shared Voices, Shared Strength, 21 November 2026
We’re busy behind the scenes preparing Muscular Dystrophy Ireland’s Shared Voices, Shared Strength Conference on Saturday 21 November at Croke Park. With a fantastic lineup of speakers and plenty of engaging discussions in store, it promises to be an informative and impactful event. Save the date!
Have you lived with a neuromuscular condition and accessed healthcare services in Ireland?
A Master's student from the School of Psychology at the University of Galway is conducting a study exploring experiences of sexual healthcare among people living with neuromuscular conditions in Ireland.
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[Special Report] MDI Barretstown Family Camp 2026: A Weekend to Remember
MDI were delighted to team up with Barretstown for our third annual Family Summer Camp. From the 15th to the 17th of May, we welcomed 30 families, totalling 140 campers, for a weekend full of laughter and connection.
MDI Counselling Service: Updated and Ready to Support You
MDI offers short-term counselling for individuals and family members, with a panel of accredited, Garda vetted counsellors and therapists supporting children, adolescents, and adults. The service includes talk-based counselling and psychotherapy, play therapy for younger members, and creative arts therapies for those who find it difficult to put thoughts and feelings into words. Sessions are generally delivered online or by phone, so support is accessible no matter where you live.
The European Commission has granted marketing authorisation for SMA treatment Itvisma
The European Commission has granted marketing authorisation for Itvisma (intrathecal formulation of onasemnogene abeparvovec, developed by Novartis) for the treatment of adults and children aged 2 years and older living with 5q spinal muscular atrophy (SMA). The European Commission’s decision follows the positive opinion adopted by the Committee for Medicinal Products for Human Use (CHMP) in April 2026.
July is Disability Pride Month
Every July, the world comes together to celebrate Disability Pride Month, a time to honour the lives, experiences, and identities of disabled people. While it may not be as widely known as other awareness months, Disability Pride Month has been growing in significance since it began with the first Disability Pride Parade in the UK and Ireland held in Belfast in 2014.
MDI Supports Neurological Alliance of Ireland Pre-Budget 2027 Submission
MDI is proud to support the Neurological Alliance of Ireland’s (NAI) Pre-Budget 2027 Submission, which was launched on 24 June.
Noeleen Gannon, Club Secretary of M&F United Powerchair Football Club, shares the impact of MDI’s support.
We are incredibly grateful to have received two Strike Force Power Soccer chairs for our club through funding provided in conjunction with MDI and The Lords Taverner’s. This generous support means so much to our club and to all of our players.
David Kennedy describes the impact of early support from MDI’s Clinic Liaison service following his diagnosis.
I still remember very clearly the day I was first diagnosed with FSH muscular dystrophy by the neurologist in Beaumont Hospital. As I left the consultation, I genuinely felt that I was on my own and unsure how to navigate what lay ahead. Just as I was about to leave the hospital, Dr. Lefter called me back to introduce me to Sinead as the Clinic Liaison Officer with Muscular Dystrophy Ireland. After spending time with her that morning, I left Beaumont in a completely different frame of mind – reassured, supported, and confident that I was not alone.
"So much joy": Sam's first weekend at Barretstown
Each year, Muscular Dystrophy Ireland runs family weekends at Barretstown — and there are few better ways to capture what they mean than through the eyes of the families who attend. This May, Sam and his family joined us for their very first weekend, and his mum, Ciara shared a beautiful video of their few days away. With her kind permission, we're delighted to share their story.
Watch Back: Our National Webinars on Supporting Students with Muscular Dystrophy and related neuromuscular conditions in School
Both of our recent national webinars for school staff are now available to watch online. Run in partnership with Education Support Centres Ireland (ESCI), the two-part series was created to help primary and post-primary educators better understand, welcome and support students living with muscular dystrophy and related neuromuscular conditions. Whether you missed the live sessions or would like to revisit them, you can now watch both recordings in full.
Una Ennis recalls her first interaction with MDI after receiving her son Archie’s DMD diagnosis.
Una Ennis reflects on her first interaction with MDI: “It was a couple of days later [after receiving her son's diagnosis] when I made that call to MDI. Sinead [CLO] answered the phone. I can barely get the words out,”
Hope for families as HSE moves to approve Duchenne drug givinostat: Prime Time speaks to campaigners and Minister for Health
Families affected by Duchenne muscular dystrophy received welcome news this week, as the HSE drugs group recommended approval of givinostat, a treatment that can help slow the progression of the condition.
Time is Muscle: MDI Calls for Transparent Timelines on Treatment Access
MDI CEO Alan Breathnach and Clinic Liaison Officer Sinéad O'Brien were in Leinster House this morning. MDI where supporting campaigning families "Time is Muscle" and had the opportunity to meet with Minister for Health and presented to a full AV room of TD's and Senators alongside our MDI Families campaigning for access to Givinostat.
MDI Vehicle Now Available in Southern Ireland for short-term loans
This vehicle will be available to service users in the Southern region for short-term loan spells, subject to terms and conditions. The aim is to support access to medical, clinical, and other essential journeys where possible.
One map. Every resource. Find accessible services near you with MDI InfoMap
Did you know MDI has a free interactive map packed with accessibility resources? From wheelchair accessible taxis and Changing Places toilets, to Irish Rail station accessibility and SpaceFinder parking apps, the MDI InfoMap brings it all together in one place. Wherever you're headed, we want to help you get there.
Liz Dickson on the experience of Barretstown with MDI and what it meant for their family
We've had the pleasure of going to Barrettstown twice now with MDI and it's been such a great experience. For Tommy and Grace, going somewhere that's so child and family-centred and completely accessible is really joyful. The activities are so engaging and fun. They loved trying archery and horse riding, but I think kayaking was a real highlight for them.
Can you take one quick action? Urgent access to Givinostat for boys with DMD
It is now one year since Givinostat was approved by the European Medicines Agency, yet Irish boys with Duchenne muscular dystrophy are still waiting for access to this life-changing treatment. We are asking you to email your local TDs and senators to urge their support to secure urgent access to Givinostat.