Muscular Dystrophy Ireland

12/06/2026

On Thursday night's Prime Time (RTÉ One, 11 June), Una Ennis, mother of nine-year-old Archie, spoke about what the recommendation means for the approximately 120 boys living with Duchenne in Ireland, and why the coming weeks matter so much. "Time is muscle," Una told presenter Fran McNulty.

https://www.mdi.ie/all-news-articles/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.

11/06/2026

MDI CEO Alan Breathnach highlighted that three important therapies — Givinostat for Duchenne muscular dystrophy, Risdiplam for spinal muscular atrophy (SMA), and Skyclarys for Friedreich's ataxia — remain unavailable to many MDI members. Although each treatment is at a different stage of the reimbursement process, patients and families continue to face significant delays.

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 alongsid

07/06/2026

One year ago, Givinostat was approved in Europe. One year later, boys in Ireland with Duchenne muscular dystrophy are still waiting.
While reimbursement processes continue, boys are losing strength, mobility and independence. Some who were eligible for treatment last year may no longer be eligible today.
Time Is Muscle.

With the HSE Drugs Group expected to meet next week, now is a critical moment. We're asking supporters to email their local TDs and senators to call for:
✅ Urgent access to Givinostat
✅ No further delays
✅ Rapid rollout planning
✅ Continued political support
Please take one minute to send the campaign email and share this message. Simply click link below to use the email template and select your constituency.

One year on. Still waiting.
Don't delay. Give our boys Givinostat today.

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 acc

04/06/2026

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.

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, ...

04/06/2026

World Day for Assistive Technology, on June 4, 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.

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, esp...

29/05/2026

Make Way Day is here.

Today, people across Ireland are heading out onto their streets to spot the everyday obstacles that get in the way for wheelchair users, people who are blind, and others with mobility needs. And sharing them to show that public space should work for everyone.

It takes two minutes. Take a photo of an obstacle near you and post it with .

Small actions, shared widely, add up. Join in today.

Take part in 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

29/05/2026

Make Way Day is here. 🙌

Today, people across Ireland are heading out onto their streets to spot the everyday obstacles that get in the way for wheelchair users, people who are blind, and others with mobility needs. And sharing them to show that public space should work for everyone.

It takes two minutes. Take a photo of an obstacle near you and post it with .

Small actions, shared widely, add up. Join in today.

29/05/2026

We were delighted to launch Make Way Day today in Carlow! 🙌

Carlow County Council marked the day with an event supported by Carlow Public Participation Network - PPN, Carlow Centre for Independent Living, Delta Sensory Gardens, and Special Olympics Ireland. A great example of local organisations coming together to highlight the everyday obstacles that get in the way for people with disabilities.

If you haven't already, head out, spot an obstacle near you, and share it with . Public space belongs to everyone.

26/05/2026

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.

Roche and the HSE are currently in negotiations regarding access to the treatment Risdiplam (Evrysdi®) for adults living in the Republic of Ireland – making this a critically important moment for the SMA community.

Thank you to everyone who has supported our campaign so far. Your support is helping keep this issue in the spotlight.

Please like, share, and help us continue raising awareness at this important time. Encourage your friends, family, and network to join in!