An Irish-italian Marriage, A Delicious Cookbook, And A Tragic Genetic Condition.
However successful or high-achieving someone seems, you never know what problems or suffering they may have privately faced. When I was a schoolgirl in Dublin many years ago, the cleverest girl we knew was called Paula Eagar. To the envy of the rest of us, Paula always came first in everything, acing every exam, and was held up as a model pupil by the Loreto nuns.
Muscular Dystrophy Ireland Statement on Skyclarys Decision
Muscular Dystrophy Ireland stands firmly with every person and family in Ireland living with Friedreich’s ataxia following yesterday’s recommendation by the HSE Drugs Group that Skyclarys should not be funded through the public health system. For people living with Friedreich’s ataxia, this is not simply a decision about a medicine or a budget. It is about time, opportunity, quality of life, and hope. Skyclarys is the first treatment approved for Friedreich’s ataxia, a rare, progressive and life-limiting condition. The possibility of a treatment that may alter or slow the progression of this disease is therefore profoundly important.
Meet the Condition Behind Walk4Ollie: Bethlem Myopathy Explained
With Walk4Ollie coming up, we wanted to share the impact of Bethlem Myopathy, a form of Muscular Dystrophy. You can support us in helping members like Ollie by donating, sharing, and joining us on the 26th of September for this year's Walk4Ollie! Contact foundation@mdi.ie for more information.
MDI's High-speed day at Mondello Park – 2026
On the 1st of July 2026, 30 racers joined MDI for a fun, fast day at Mondello Park. MDI have proudly partnered with Mondello Park since 2021.. The brave racers got behind the wheel of high-performance electric cars before taking the passenger seat for a once-in-a-lifetime Porsche experience. Accompanied by an experienced driver, they enjoyed a thrilling high-speed lap around Mondello's famous 3.5 km international racetrack. It was a day packed with adrenaline, speed and excitement!
MDI Announces 2026 AGM for 5 September — Constitution Vote and Board Elections on Agenda
Muscular Dystrophy Ireland has issued notice of its 2026 Annual General Meeting, to be held online via Zoom on Saturday, 5 September at 12 noon. Members will be asked to approve audited financial statements, elect directors, and vote on a special resolution to adopt a new company Constitution. Two Board seats are also open, with nominations sought in HR, legal, and governance expertise. Registration closes 5pm, Friday 21 August, with attendance reconfirmation due by 5pm, Monday 24 August.
We're Hiring: Quality & Governance Lead
MDI is seeking a Quality & Governance Lead to join our team on a part-time, fixed-term basis (17.5 hours per week). This is a key role supporting the CEO, Senior Management Team, and Board Committees in strengthening governance, quality assurance, and compliance across the organisation, helping MDI maintain best practice as we continue to grow and evolve.
Win a Stay at Teach Susie: MDI's Accessible Donegal Holiday Home Raffle
This October mid-term, one lucky MDI member could be packing their bags for a break by the sea. MDI is raffling off two four-night stays at Teach Susie, a fully accessible holiday home in the seaside village of Portnoo, Co. Donegal
Assistive Technology News Monthly: August 2026
The August edition of MDI's Assistive Technology Monthly Update is here. This month we invite members to register for an online workshop on 9th September exploring the built-in accessibility features of Windows, iOS and Android, covering touchscreen customisation, hands-free access, and Smart Home technology. We also feature the inspiring story of the Kellycaster, a guitar built bespoke to a disabled musician's access needs, alongside adaptive guitar techniques for disabled players. Our Product Spotlight this month looks at smart sockets, and the resources section rounds up adaptive tools for fishing, kayaking, crafting, and music, from hands-free rod holders to fully customisable Bluetooth switches.
New Support Service: Talking to Your Child About a Neuromuscular Condition
One of the questions many families face following a diagnosis of a neuromuscular condition is: “How do I talk to my child about what is happening?” These conversations can feel difficult, and many parents and guardians are unsure what to say, how much information to share, or how their child may respond. MDI is pleased to introduce our new Talking to Your Child support service, designed to help parents and guardians prepare for these important conversations.
Only 37% of orphan medicines are reimbursed in Ireland. Rare Diseases Ireland calling for faster access.
Rare Diseases Ireland has highlighted a critical issue: 163 orphan medicines now have EU approval, but people living with rare diseases in Ireland face long delays getting access. They're urging the Minister for Health to establish an Early Access Scheme so patients can get life-changing treatments within one year of approval, not years down the line.
Calling All SMA Researchers: International researchers are invited to explore two exciting funding opportunities.
International researchers are invited to explore two exciting funding opportunities currently available from SMA Europe and Cure SMA. Both organisations have active grant calls supporting research that aims to advance our understanding of spinal muscular atrophy (SMA) and improve outcomes for people living with the condition.
Walk4Ollie Returns on 26 September 2026!
Walk4Ollie is back! On Saturday, 26 September, Paddy Hickey will tackle the seven-leg journey from North Wall, Dublin to Enfield, Co. Meath, raising vital funds for Muscular Dystrophy Ireland and the Ollie Hickey Fund. The route takes in Cross Runs Bridge, Castleknock, Leixlip Confey, Maynooth, Kilcock, and Fern's Lock, with supporters invited to join for any leg that suits them.
Have your say! - How does Climate Change impact you?
Global Action Plan (GAP) have reached out to MDI and asked us to share their survey on disability and climate change. ChangeABLE is an Erasmus+ project that GAP is delivering with partners in Ireland, Italy and Germany, and it originated out of shared concerns that people with disabilities aren’t being meaningfully included in climate action planning. They want to hear your feelings about climate change. How climate change affects you and what has changed in your daily life.
![[Press Release] RTÉ Toy Show Grant Brings Barretstown Family Camp Back for 2027.](https://images.squarespace-cdn.com/content/v1/63c138561d3afd3c27c17d5d/1784677211936-ACRTIYOWN1N2IGZW1W6M/ToyShowAppeal.png)
[Press Release] RTÉ Toy Show Grant Brings Barretstown Family Camp Back for 2027.
Muscular Dystrophy Ireland is one of over 170 organisations benefitting from the latest round of RTÉ Toy Show Grants which been made possible by the generosity of the annual television spectacle.
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