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[Evoke] Young Irish woman has hope after life-changing diagnosis
Jodie Donovan never liked wearing high heels. She struggled to walk in them, feeling unstable and off-balance. Even taking a few steps was a challenge, so she would often forego the skyscrapers on nights out in town and opt for flats instead.
Attention MDI Members: the nomination process for potential election to our board is now open.
If you are a paid-up member of Muscular Dystrophy Society of Ireland CLG as of 31st March 2025, we are pleased to let you know that, as of August 1st 2025 , the nomination process for potential election to our board is now open.
August is Spinal Muscular Atrophy (SMA) Awareness Month!
Spinal muscular atrophy (S.M.A.) is a rare neuromuscular condition that causes motor neuron loss and gradual muscle wastage. It is typically identified in infancy or early childhood, and if ignored, it is the leading hereditary cause of infant death. It may sometimes occur later in life, resulting in a milder version of the disease.
MDI Open Call: HRCI-HRB Joint Funding Scheme 2025/2026 Expressions of Interest
MDI is pleased to invite expressions of interest for the 2025/2026 HRCI‑HRB Joint Funding Scheme.
MDI and AIPF Launch 2025 Strikeforce Powerchair Programme Following Last Year’s Resounding Success
Muscular Dystrophy Ireland (MDI), in partnership with the Association of Irish Powerchair Football (AIPF), and with support from third-party funding, is delighted to announce a new opportunity for clubs to apply for six Strikeforce powerchairs - for allocation in 2025.
MDI member, Andy shares his experiences on the benefits of swimming and some obstacles he faced.
I used to go swimming twice a week before Covid. When I went back after Covid, I wouldn’t have been able for twice a week at the start and so went just once a week. However, when I was ready to get back to going twice a week, as I need help in the swimming pool, I originally found it difficult to get Personal Assistance support back in place again for the second time, but I have it now.
MDI Signs EOPD’s Joint Letter in The Irish Times, 21st July 2025: No More Wasted Lives
On 21 July, Early Onset Parkinson’s Disease Ireland (EOPD.ie), together with 16 other national charities and alliances, including Muscular Dystrophy Ireland, issued a joint letter to The Irish Times calling for urgent action to end the inhumane practice of placing people under 65 — living with neurodegenerative conditions, acquired brain injuries, and other complex needs — in nursing homes.
This collective statement highlights the critical need for a dedicated national strategy that ensures appropriate supports, services, and community-based living options for people with complex needs.
Don't Miss These Upcoming Webinars from the Action Duchenne 2025 Series
The Action Duchenne Webinar Series 2025 is designed to shine a spotlight on the most challenging and important areas of Duchenne muscular dystrophy, bringing national and international experts to you, in the comfort of your own home. Together we can navigate the complex environment that a Duchenne diagnosis brings, empowering you to make the best-informed decisions while dealing with a complex and often overwhelming diagnosis.
The MDI-Dr John Roche Education Bursary, totalling €2,000 annually is now open for applications.
We are excited to announce that the Muscular Dystrophy Ireland-Dr John Roche Education Bursary, totalling €2,000 annually, is now open for applications. MDI hopes to support two of our members with €1,000 each towards their education costs this Autumn. The deadline for applications is Friday 15th August 2025.
Parent Project Muscular Dystrophy 2025 Annual Conference
From the latest in approved therapies and cutting-edge research to lived experiences from families, caregivers, and individuals living with Duchenne and Becker, these sessions capture the strength and determination of this incredible community.
Unlock Resources, Support & Inspiration: Explore MDI’s FAQs, Employment Guide, and Sports Hub for People with Neuromuscular Conditions!
Your Guide to Living Well with a Neuromuscular Condition: FAQs, Jobs & Sports!
Calling all runners! Join us and fundraise for the work we do to support adults and children living with neuromuscular conditions in Ireland.
If you want to make your running mean even more, there are plenty of races for all paces coming up across Ireland in the next few months. Join us and fundraise for the work we do to support adults and children living with neuromuscular conditions in Ireland.
Tyrone Productions seeking participants for a new RTÉ series!
The team at Tyrone Productions are producing an exciting new RTÉ series, fronted by Brendan O’Connor, that will shine a spotlight on the career journeys of individuals with disabilities.
MDI wants to hear from you!
MDI’s next organisational Strategic Plan will run from 2026-2028 and to ensure our services are as responsive, inclusive and transformative as possible we’d love to hear from current MDI members with a neuromuscular condition and their families.
MDI are delighted to share the presentations and speakers from the recent FSHD Connect Europe
This event that marked a significant milestone for the European FSHD community. The meeting brought together 200 participants, patients, family members and caregivers, from 25 countries across Europe and beyond.
Inside the 2025 International Research Congress on FSHD: Breakthroughs, Hope, and the Road Ahead
The 2025 International Research Congress (IRC) on Facioscapulohumeral Muscular Dystrophy (FSHD) convened June 12-13 in Amsterdam and online, gathering the world’s leading scientists, clinicians, and industry experts to share the latest advances in FSHD research and therapy development. This year’s congress highlighted not only the accelerating pace of scientific discovery but also the growing momentum toward effective treatments for this challenging and progressive muscle disease.
MDI Family Camp 2025: Another Magical Weekend!
There was no shortage of action across the weekend: horse-riding, canoeing, rock climbing, mini-golf, archery, arts and crafts, music and drama…and as for the parents? Let’s just say there were some very interesting outfit choices, and as far as we’re concerned, what happens at camp stays at camp 😉.
Amyloidosis Ireland International conference 2025 (13th-15th June)
Muscular Dystrophy Ireland were delighted to be invited to the Amyloidosis Conference in Derry and were very honored when asked to be part of their guest speaker line up and to give a presentation about MDI and the services we provide to our members.