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.
Next Disability Show to take place on Thursday May 7th 2026 at The Curragh Racecourse!
Following the wonderful success of their previous event, 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.
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[CarlowLive] 'A slap in the face' - Carlow student (23) misses weeks of college due to carer no shows
Dylan Walsh is a wheelchair user who has expressed huge frustration over being forced to go home when a carer doesn't show up for him in his course, which is just one of many obstacles in his everyday life
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[Action Duchenne] New Webinars Coming Up
We're excited to let you know about the next webinars in our series as explore the full reality of Duchenne, from diagnosis and education to mental health, caring, identity, grief and future planning.
MDI Relaunch Wellbeing Programme: Your Wellbeing, Your Way
Wellbeing isn’t one-size-fits-all. Our programme lets you pick the supports that matter most. It’s designed around what you want to get out of it. Your journey, your pace, your choice. Our wellbeing supports are continuing in 2026, giving members the opportunity to choose the support that best suits their own needs and interests.
Assistive Technology News Monthly: March 2026
The MDI Assistive Technology Monthly Update is a free resource produced by Muscular Dystrophy Ireland for our community. Each edition brings together the latest news and developments in assistive technology, a product spotlight featuring recommendations from our members, and a curated selection of resources, tools, and links to help support daily living.
Donahies Community School Students Score Big for Muscular Dystrophy Ireland!
The MDI Team were delighted to be invited to Donahies Community School, Co. Dublin to give a talk to some of its students about Muscular Dystrophy Ireland and to also thank them for fundraising for us.
Opportunity for young people aged 14 to 17 - Join UNICEF Ireland Youth Action Group!
UNICEF Ireland is launching a Youth Action Group, bringing together a small group of young people from across the country to share ideas, learn about youth activism and children’s rights, as well as helping to shape their advocacy work for young people and contributing to conversations and campaigns on issues affecting young people today.
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[RTE] Muscular Dystrophy – One family’s experience
Parents of children with Duchene Muscular Dystrophy are continuing to campaign for access to a new game-changing drug. Michael Brogan, who's son Fionn has this rare muscle-wasting condition spoke to David. Also Fianna Fáil Senator Teresa Costello who has been involved in this campaign.
Webinar to Shine a Light on the Vital Role of Neurology Nurses as Brain Awareness Week Gets Underway
A webinar will take place on Monday, 16 March to launch a national awareness campaign, #MyNeurologyNurseAndMe - highlighting the Vital Role of Nurse Specialists in Neurological Care. Organised by the Neurological Alliance of Ireland as part of National Brain Awareness Week
Passion, Pride & Champions: Team MDI Honoured to Witness the AIPF League Final
Some of Team MDI were lucky enough to be invited, by the AIPF board, to the decider of the league in Gormanstown park on Saturday 7th of March 2026.
Your Experience Matters: Share Your Diagnosis Story
We’re inviting members to share their path to diagnosis - particularly if you experienced a long, difficult, or uncertain path to getting answers. We know that many of our members have had challenging journeys to reach a diagnosis, and sharing those experiences can make a real difference in improving understanding among our members and healthcare professionals.
