"So much joy": Sam's first weekend at Barretstown
Each year, Muscular Dystrophy Ireland runs family weekends at Barretstown — and there are few better ways to capture what they mean than through the eyes of the families who attend. This May, Sam and his family joined us for their very first weekend, and his mum, Ciara shared a beautiful video of their few days away. With her kind permission, we're delighted to share their story.
Watch Back: Our National Webinars on Supporting Students with Muscular Dystrophy and related neuromuscular conditions in School
Both of our recent national webinars for school staff are now available to watch online. Run in partnership with Education Support Centres Ireland (ESCI), the two-part series was created to help primary and post-primary educators better understand, welcome and support students living with muscular dystrophy and related neuromuscular conditions. Whether you missed the live sessions or would like to revisit them, you can now watch both recordings in full.
Hope for families as HSE moves to approve Duchenne drug givinostat: Prime Time speaks to campaigners and Minister for Health
Families affected by Duchenne muscular dystrophy received welcome news this week, as the HSE drugs group recommended approval of givinostat, a treatment that can help slow the progression of the condition.
Time is Muscle: MDI Calls for Transparent Timelines on Treatment Access
MDI CEO Alan Breathnach and Clinic Liaison Officer Sinéad O'Brien were in Leinster House this morning. MDI where supporting campaigning families "Time is Muscle" and had the opportunity to meet with Minister for Health and presented to a full AV room of TD's and Senators alongside our MDI Families campaigning for access to Givinostat.
MDI Vehicle Now Available in Southern Ireland for short-term loans
This vehicle will be available to service users in the Southern region for short-term loan spells, subject to terms and conditions. The aim is to support access to medical, clinical, and other essential journeys where possible.
One map. Every resource. Find accessible services near you with MDI InfoMap
Did you know MDI has a free interactive map packed with accessibility resources? From wheelchair accessible taxis and Changing Places toilets, to Irish Rail station accessibility and SpaceFinder parking apps, the MDI InfoMap brings it all together in one place. Wherever you're headed, we want to help you get there.
Liz Dickson on the experience of Barretstown with MDI and what it meant for their family
We've had the pleasure of going to Barrettstown twice now with MDI and it's been such a great experience. For Tommy and Grace, going somewhere that's so child and family-centred and completely accessible is really joyful. The activities are so engaging and fun. They loved trying archery and horse riding, but I think kayaking was a real highlight for them.
Can you take one quick action? Urgent access to Givinostat for boys with DMD
It is now one year since Givinostat was approved by the European Medicines Agency, yet Irish boys with Duchenne muscular dystrophy are still waiting for access to this life-changing treatment. We are asking you to email your local TDs and senators to urge their support to secure urgent access to Givinostat.
![[RTÉ News] 'Time is muscle' - decision urged on rare disease medicine](https://images.squarespace-cdn.com/content/v1/63c138561d3afd3c27c17d5d/1780591796791-P9MCQ6K5TEIAM4OA44CR/00246a30-800.webp)
[RTÉ News] 'Time is muscle' - decision urged on rare disease medicine
The parents of a child with a rare muscular disease are urging that the State does "not delay any longer" in making decisions on access to a drug that has been approved for use in Europe but has not been approved for reimbursement in Ireland.
![[RTÉ News] Father of rare disease patient fears losing second son](https://images.squarespace-cdn.com/content/v1/63c138561d3afd3c27c17d5d/51c88199-b155-4ab1-ad5e-dec7d8adbec8/00246f91-800.webp)
[RTÉ News] Father of rare disease patient fears losing second son
Patients with rare diseases and their families travelled to Leinster House to call for action on access to new medicines.The group is calling on the Government to introduce a dedicated new line item in the Budget for new drugs, a review of the reimbursement scheme and an expansion of the Early Access Programme.
How I Learned to Drive from My Wheelchair and Why It Changed Everything.
Emer drives her wheelchair-adapted car independently — from the button on her keys that automatically opens the back door and deploys the ramp, to the hand controls and dial system that put everything within reach.
Caoimhe Boers: How the iPad paved the way for me as an Artist
For as long as I can remember, I’ve loved stories, animation, fairy tales, and illustration. Growing up, I never really saw myself as “artistic” in the traditional sense. Because of reduced mobility in my hands and arms, drawing with pencil and paper was difficult for me. Things like shading, controlling fine movements, or reaching across a page could be frustrating.
The 4th of June is Assistive Technology Day! A.T Monthly Update June 2026
World Day for Assistive Technology, on June 4, 2026, is the perfect opportunity for everyone— individuals, organizations, businesses, and policymakers from across the world—to come together and champion the importance of assistive technology. The goal? To increase access and raise awareness, especially in low- and middle-income countries.
Vote for MDI in the AIB Community €1M Fund!
Please complete the nomination form between now and 19th June at 5pm to nominate MDI to receive part of AIB's Community €1M Fund to support our services.
Sharing Jake’s experience, Elaine O’Dwyer highlights the value of connection and community through MDI’s Youth Service
“MDI’s youth service and youth clubs have meant so much to our family. Through the service, our 12-year-old son has had the opportunity to build friendships and grow in confidence.”
The Hubert Assistive Technology Programme Monthly Update May 2026
The Hubert Assistive Technology support service offers individualised support to members with a neuromuscular condition by providing them with valuable information, support, and advocacy on how to secure smart technologies that can assist members to improve challenges faced in their everyday lives. Our aim is to create a supportive environment where individuals with a neuromuscular condition can thrive and achieve their full potential. People with disabilities face a variety of challenges, be it at home, in education, employment, healthcare, social isolation, independent living, and funding, we want to assist members in getting assistive technology to help them with these areas. We will contact you to follow up.
MDI Family Camp 2026: Another Magical Weekend!
On behalf of the MDI Youth Team, we just want to say a big thank you to everyone for joining MDI at the Barretstown family camp and making it a fantastic weekend.
Your Rare Disease Journey Matters — Share It in 30 Minutes with Rare Diseases Ireland
Rare Diseases Ireland is testing a new questionnaire designed specifically to capture the healthcare experiences of people living with rare diseases and their caregivers. The questionnaire was built specifically for rare diseases - covering the things standard questionnaires always miss, like how long it took to get a diagnosis, or what it's like coordinating care across multiple specialists.
Take part in #MakeWayDay26 on Friday 29 May 2026
Take part in #MakeWayDay26 on Friday 29 May 2026 by posting photos of everyday obstructions in public spaces. Led by the Disability Federation of Ireland, this campaign raises awareness of barriers faced by people with disabilities and how small changes can make shared spaces more accessible. MDI is proud to support the campaign as a member organisation.
Please show your support for our Campaign for Equal Access to Treatments for Adults Living with Spinal Muscular Atrophy (SMA) at this crucial time!
Listen to Emer’s story. She can’t get treatments due to her age, and she explains our campaign for equal access to treatments for SMA adults in Ireland.