A momentous day for the Friedreich ataxia community in Ireland
MDI welcomes the HSE’s decision to approve reimbursement of Skyclarys (omaveloxolone) for eligible adults living with Friedreich ataxia in Ireland. This decision comes after months of campaigning which saw the whole community come together, with people across Ireland getting behind the campaign and supporting people living with Friedreich ataxia and their families.
Bookings are now open for MDI’s National Conference 2026!
We are delighted to announce that bookings are now open for MDI’s National Conference 2026. Join us on Saturday, 21 November 2026 at Croke Park, Cusack Stand, Dublin for a day of learning, connection, and shared experiences. Places are limited, so we encourage you to book early to secure your spot. Find out more about the conference and book your place.
Get Involved with Walk4Ollie 2026
Walk4Ollie is back! This year, the annual fundraiser and awareness campaign in aid of MDI takes place on Saturday, 26th of September, starting at North Wall in Dublin and finishing up in Enfield, Co Meath where we’ll finish up the day celebrating with Rock4Ollie
Important Milestone for Risdiplam Access for Adults with SMA in Ireland
MDI is delighted to share an important update in our campaign for equal access to treatments for adults living with spinal muscular atrophy (SMA).
New Physiotherapy Referral Service with Spectrum Health
We are pleased to announce the launch of a new physiotherapy referral service for Muscular Dystrophy Ireland members, delivered in partnership with Spectrum Health.
Get Your Bad Shirt Out: Bad Shirt Friday Returns on 4th September
Bad Shirt Friday is a campaign raising awareness and vital funds for Duchenne Muscular Dystrophy, and this year it comes with a brilliant twist: an exclusive gig featuring The Bonnevilles, with support from Stafel. All profits from the night go directly to Muscular Dystrophy Ireland.
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.
Looking Back at Q2: Active Disability Ireland News & Updates
Active Disability Ireland has had a busy quarter, with a refreshed inclusion charter, a national awards ceremony, new board appointments, a major policy consultation, and continued progress on research and training. Here's a full round-up.
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.
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.