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Latest News
On Tuesday 14 July, the Together, we showed that a strong community can make a difference by helping secure access to Givinostat for boys living with Duchenne muscular dystrophy – now it’s time to unite behind people living with Friedreich’s Ataxia and support access to Skyclarys.
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.
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.
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.
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.
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
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!
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.
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 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 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.
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.
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Our vision
MDI envisages an Ireland that enables people with neuromuscular conditions to fully participate in society and reach their full potential.
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Our mission
Using a member-centred approach, we provide information and support to people with neuromuscular conditions and their families through a range of support services. Advocating for services and entitlements for members; Educating and informing society about neuromuscular conditions and supporting researchers and clinicians to carry ourt quality research into neuromuscular conditions.
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Our values
1. Respect and empathy
We seek to build relationships based on respect and empathy.
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Our values
2. Transparency and integrity
We carry out all our work to the highest standards, underpinned by honesty, accountability and consistency.
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Our values
3. Equality and fairness
We are committed to equality and fairness and to ensuring the right to equal access to services based on the needs of the individual.
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Our values
4. Inclusiveness
We strive to be inclusive, valuing and respectful of diversity.
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Our values
5. Personal empowerment
We believe personal empowerment is about being able to make choices and having a voice.
Our Services
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Youth Service
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Equipment Loans
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Counselling and Bereavement
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Adult Peer Connection
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Family Support Services
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Transport Service
Transport service, driver inside van
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Home From Home
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Advocacy
Our Impact
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Ollie's Walk for MDI
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AIPF – Irish Powerchair Football Team
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Dr John Roche Education Bursary
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2024