Remembering Adrian Walsh and the Founding Members of Muscular Dystrophy Ireland
On this month's mind, we pause to remember Adrian and to honour the extraordinary life he gave in service to others. His vision helped bring MDI into being, and his influence has touched the lives of countless families across Ireland in the decades since.
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[Watch] MDI's FSHD Community Gathering: Connection, Knowledge and Community
MDI hosted an online FSHD Community Gathering in October 2025, bringing together people living with facioscapulohumeral muscular dystrophy (FSHD) and their families for a half day of learning, discussion and connection. This event brought together a rich mix of perspectives, combining clinical insight, advocacy, and lived experience within the FSHD community.
"The Value of Collaboration and the Power of Listening": MDI and Beaumont Hospital Deliver Changing Places Facility
MDI have been engaging with Beaumont on ensuring fully accessible facilities are available to our members. This has resulted in the offical opening of a new Changing Places facility in the Outpatient Department at Beaumont Hospital. The new facility marks a significant step forward in the provision of Changing Places Toilets in Ireland in a hospital setting and it represents a vital development in promoting dignity, inclusion and accessibility for people with complex needs in Beaumont Hospital.
Emergency Disability Payment Campaign Update: A Message From DFI
There is deep disappointment, and growing anger that no targeted supports have been implemented specifically for the disabled community, particularly from a government that has identified disability as one of its top priorities.
Meet the MDI Siblings Programme
We're proud to share our dedicated Siblings Programme webpage — a space created for the brothers and sisters who grow up alongside a loved one with muscular dystrophy
Clinical Trial Update: Early Results Published for DM1 Investigational Therapy
Pharmaceutical company PepGen has published preliminary results from the first phase of its FREEDOM2-DM1 clinical trial, which is investigating a potential new therapy for people living with myotonic dystrophy type 1 (DM1).
'Together we are strong': April 15 is International Pompe Day.
Run, Walk or Roll for Pompe is a fun event with a purpose. Every step you take helps muscles move and creates awareness of this rare disorder.Your efforts will help fund the IPA Erasmus Survey. This survey collects information directly from patients and has contributed to more publications than any other survey or registry.
Muscular Dystrophy Ireland is delighted to launch the Jimmy Murray Centre Stage Fund
Created in memory of our much loved and much missed colleague.Jimmy believed in making the most of every opportunity and never saw disability as a reason to remain waiting in the wings when life had something to offer. Whether attending theatre, comedy, football, or social events, he approached each experience with determination, humour, and a strong sense of enjoyment, always finding a way to be part of the occasion.
![[Event] Disability and Health Disclosure in the Workplace: Legal Responsibilities and Supportive Practices](https://images.squarespace-cdn.com/content/v1/63c138561d3afd3c27c17d5d/1776105052924-QAUE2OWJA8B4G09EUS3K/WHE_1_Logo-1024x614.jpg){kind=logo}
[Event] Disability and Health Disclosure in the Workplace: Legal Responsibilities and Supportive Practices
This training explores how disclosures can be navigated safely, respectfully, and in line with equality legislation.Participants will gain practical tools to respond appropriately, create psychologically safe environments, and understand the legal responsibilities organisations have when someone shares personal information.
![[GetAHEAD] Students or Grads with Disabilities - Explore sharing disability info at work!](https://images.squarespace-cdn.com/content/v1/63c138561d3afd3c27c17d5d/b084939b-f9e9-4a17-b6e0-8bc8fcad14ef/dd340a5f-2960-3ff8-7050-947089b7f39e.png)
[GetAHEAD] Students or Grads with Disabilities - Explore sharing disability info at work!
The GetAHEAD programme at AHEAD is excited to offer a free online workshop on the topic of Disclosing your Disability in the Workplace!
Exciting Announcement: Save the date MDI Conference 2026!
We’re delighted to share that MDI’s National Conference – Shared Voices, Shared Strength – will take place on Saturday, 21 November 2026 at Croke Park.
Campaign for Friedreich's Ataxia Treatment Access Continues — Read the Latest
FARA Ireland's April 2026 Advocacy Bulletin details the latest steps being taken to secure reimbursement of SKYCLARYS for people living with Friedreich's Ataxia in Ireland. Download the full bulletin for an update on where things stand.
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[Irish Times] ‘There is a treatment and she’s not getting it’: Calls for HSE to fund drug for rare disease
Emily Felix (28) has remained hopeful and “motivated” that one day a treatment would become available for the rare disease that has shaped her world. Felix, from Kilkenny, was diagnosed with Friedreich’s ataxia (FA) at the age of 12, one of only 200 people with the condition in the country.
Minister for Health announces introduction of screening for Severe Combined Immunodeficiency and Spinal Muscular Atrophy
Muscular Dystrophy Ireland warmly welcomes the introduction of testing for spinal muscular atrophy (SMA), commencing today as part of the expansion of the National Newborn Bloodspot Screening Programme
To mark World Health Day this week we’re delighted to share recordings from MDI’s National Conference 2025, Connection
Our annual conference took place at Croke Park this year under the theme of 'Connection' — and what a day it was. Members, experts and supporters came together for a series of workshops and sessions, and we're delighted to now share the full video recordings so you can revisit the highlights or catch up on anything you missed.
Finally, a Dublin Stay That Works for Our Family | MDI Home from Home
Caroline Cahill from Kilkenny knows how difficult it can be to find fully accessible accommodation in Dublin. Thanks to MDI's Home from Home apartment, she and her family can visit the capital with confidence — and make memories along the way, from trips to Dublin Zoo to exploring the city centre. Watch Caroline share her experience in her own words.
Clinical Trial Updates from the USA on Becker Muscular Dystrophy and Duchenne Muscular Dystrophy
A lot has happened recently regarding clinical trials for Duchenne Muscular Dystrophy, and Becker Muscular Dystrophy (Hereafter referred to as Duchenne and Becker). All of these updates are from the American Muscular Dystrophy Association Clinical & Scientific Conference in Orlando that took place from March 8th - 11th let’s start with an update from a Becker Trial.
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[Webinar] Supporting Post Primary School Students with Muscular Dystrophy and Related Neuromuscular Conditions
Participants will gain: Enhanced knowledge of muscular dystrophy and related neuromuscular conditions. Insight into the barriers and challenges that students living with these conditions may experience. Practical strategies for fostering an inclusive and supportive learning environment.
Webinar: Supporting Primary School Students with Muscular Dystrophy and Related Neuromuscular Conditions
Following the wonderful success of their previous event, The Disability Show is building something even bigger and better this time – with more exhibitors, informative talks, networking opportunities, and a continued focus on accessibility, inclusion, and empowerment. Whether you're an organisation supporting people with disabilities, a service user, advocate, family member, or simply passionate about making a difference – this event is for you.