MDI Members Have Their Say: Survey Highlights Accessibility Gaps and Energy Costs Ahead of Disability Act Review
With the Disability Act 2005 under review for the first time in over 20 years, and growing concern about poverty among people with disabilities, Muscular Dystrophy Ireland recently surveyed members to hear about their experiences first-hand. Thirty-five members and family members took part, representing a range of ages, conditions and living situations across the country. The findings paint a clear picture: two decades on from the Act, significant barriers remain in housing, public spaces and daily living costs.
Assistive Technology News Monthly: September 2026
This month's AT newsletter is packed with opportunities to learn and connect. Two free online workshops are coming up: Juliann from Enable Ireland explores the built-in accessibility features of Windows, iOS and Android (9 September, 7pm–8pm), and Jackie from Fighting Blindness demonstrates how smart home devices like Alexa, smart plugs and bulbs can support independent living (23 September, 7pm–8pm).
Have you booked your place at MDI’s National Conference 2026 yet?
Join us on Saturday, 21 November 2026 at Croke Park, Cusack Stand, Dublin for Shared Voices, Shared Strength – a day dedicated to learning, discussion, advocacy and connection within the neuromuscular community. The conference brings together people living with neuromuscular conditions, family members, healthcare professionals and supporters to share experiences, hear from expert speakers and explore issues that matter most to our community.
Crimes against fashion, committed for a very good cause! 👔🎸
Team MDI have been embracing the Bad Shirt Friday spirit today ahead of tonight's fundraising gig at First Presbyterian Church, Rosemary Street, Belfast. Even our CEO Alan and Comms Officer Niall got in on the act!
The Bonnevilles back muscular dystrophy fundraiser with good music and bad shirts
IRELAND'S premier garage-punk-blues duo The Bonnevilles will be lending their support to a very good cause this evening when they join the bill of a special charity show at First Presbyterian Church in Belfast.
September is Muscular Dystrophy Awareness Month
September is Muscular Dystrophy Awareness Month, and we wanted to take this opportunity to remind members and families about the range of free wellbeing services available through MDI.
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.
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.