We made progress for boys with DMD. Now it’s time to support people with FA!
We are advocating for urgent access to Skyclarys. For individuals and families affected across Ireland, timely access to this treatment is of utmost importance. Families understand that processes must be followed, but what we are asking for now is urgency, transparency and clear timelines. Delays in reimbursement decisions can allow the condition to worsen permanently, leading to long-term effects on health and wellbeing. Whatever the outcome of this meeting, there must be no unnecessary delays.
Assistive Technology News Monthly: July 2026
The July edition of MDI's Assistive Technology Monthly Update is here. This month we invite members to join our new AT Peer Support Group and register interest in our upcoming AT webinar series, led by MDI staff and experts in the field. You will also find presentations from AHEAD's three-day Gather event on assistive technology in further and higher education, plus an inspiring Irish Times feature on how AT supported one man's recovery after spinal cord injury. Our Product Spotlight features an electric adjustable bed recommended by a member, and the resources section rounds up adaptive clothing and footwear suppliers for adults and children.
Johnny Matthews Golf Classic Raises Support for MDI and Three Fellow Charities
The 6th Annual Johnny Matthews Golf Classic took place at Tramore Golf Club, Waterford on the 10th and 11th of July, raising funds and support for four charities: Muscular Dystrophy Ireland, Cystic Fibrosis Waterford, Autism Friendly Waterford and The Waterford Foodbank.
July 12th is Disability Awareness Day
Disability Awareness Day, celebrated on July 12th, is one of the largest events of its kind in the UK, held annually in Warrington and recognised nationwide. This day aims to raise awareness of the various challenges faced by disabled people and promotes inclusivity, accessibility, and equality. The event features a wide range of activities, including information stalls, demonstrations of accessible technologies, and discussions on disability rights. Disability Awareness Day seeks to break down barriers, celebrate the achievements of disabled people, and highlight the importance of creating accessible environments for all.
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.