MDI supports Neurological Alliance of Ireland’s Pre-Budget 2026 Submission
NAI published its Pre Budget Submission on June 24th, calling for investment in neuro-rehabilitation services.
MDI supports Disability Federation of Ireland’s Pre-Budget 2026 Submission
As one of its member organisations, MDI joins with Disability Federation of Ireland (DFI) calling for urgent action across six key areas in its Pre-Budget 2026 Submission:
August is Spinal Muscular Atrophy (SMA) Awareness Month: Educate, Support, Research
Spinal muscular atrophy (SMA) is a genetic condition that affects the motor neurons, causing progressive muscle weakness and wasting (atrophy). SMA is also called 5q SMA. This is because, in most cases, SMA is caused by a change in the SMN1 gene located on chromosome 5 (5q). 5q SMA has traditionally been classified into type 1, 2, 3, and 4, based on when symptoms appear and how severe they are. Type 0 is a rare and very severe form with symptoms developing before birth. SMA can be diagnosed through genetic testing in pre-symptomatic stages.
Funeral arrangements for Jimmy Murray
Reposing at Cunningham’s Funeral Home, Clonsilla on Sunday evening (August 24th) between 4 pm and 6 pm. Removal on Monday morning (August 25th) to The Church of Our Lady Mother of the Church, Castleknock arriving for Funeral Mass at 11 am followed by cremation in Glasnevin Crematorium.
It is with deepest regret that we have to share the news of the passing of our wonderful friend and colleague Jimmy Murray.
Jimmy was a very proud member of our MDI family, starting as the chairman many years ago and then a valued member of the staff team for an incredible 25+ years. Jimmy was a true representation of our organisation, his willingness to go above and beyond for, not only our members, but for every member of the staff team that knew him, was just one of his passions, he will be irreplaceable.
The HSE has launched an updated Health Passport App
This App includes sections on Critical Information, Personal Information, Communication, Decision Making, Medical History, Food and Drink, and Personal Care. There is an option to email the passport, if required, to a health or social care professional prior to an appointment or admission to the hospital.
Republic of Ireland v Hungary - FAI Tickets for MDI Members
We’re delighted to offer MDI members the chance to attend the Republic of Ireland v Hungary match on Saturday, 6th September at the Aviva Stadium – thanks to the Ollie Hickey Fund.
Unfinished Business: Equal Access to Treatments for SMA Adults!
We continue to shine a light on the unfair exclusion of approximately 20 adults living in Ireland from accessing approved, lifesaving SMA treatments. Despite overwhelming public support and backing from numerous TDs, senators and healthcare professionals, these individuals are still being denied treatment simply because they were over 18 at the time of the original HSE approval.
Save The Date: Muscular Dystrophy Ireland’s national conference 2025
Join us as we welcome back Dr Jeff Preston from Canada to speak on our conference theme, CONNECTION. Save the date and stay tuned for more updates on our agenda. Don’t miss this opportunity to connect and grow together!
![[Evoke] Young Irish woman has hope after life-changing diagnosis](https://images.squarespace-cdn.com/content/v1/63c138561d3afd3c27c17d5d/1754413097143-SSRK8NE0FUI2S7IOK9H1/SEI259849371.webp)
[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 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.