Help Shape Future Research: Join Our PPI Group
MDI has a small group of PPI contributors who participated in two research studies last year. We are keen to expand this group and particularly welcome parents and caregivers of people with a neuromuscular condition
Medical Independent: New molecular technology required for SCID and SMA screening – HSE
The introduction of new molecular technology to the National Newborn Bloodspot Screening Laboratory (NNBSL) is required to implement screening for severe combined immunodeficiency (SCID) and spinal muscular atrophy (SMA), according to the HSE. The Executive indicated this was an additional requirement to the “substantial” body of work required to introduce any new condition to the programme.
IHREC Consultation on Independent Living takes place Tuesday 15th April 2025
IHREC is the Independent Monitoring Mechanism (IMM) under the UNCRPD. Our role is to promote and monitor the implementation of the UNCRPD in Ireland. The Commission will produce a submission reviewing Ireland’s implementation of the UNCRPD in the coming months. This is to inform the consideration by the UN Committee on the Rights of Persons with Disabilities of the ‘List of Issues’ that will be the basis of the States’ review by the Committee in 2028. This consultation event will contribute to our report of the UNCRPD in Ireland.
Help Us Understand Pain in Children and Young Adults With Physical Disabilities
By sharing your experiences, you will help improve understanding, shape future research, and contribute to better supports aimed at reducing pain for children and young people with physical disabilities.
🔄 A.T. Tuesday: Switchify revolutionises how people with physical disabilities interact with their Android devices.
Founder and Developer of Switchify Owen McGirr is a passionate software developer and accessibility advocate from Donegal, Ireland. Living with cerebral palsy, Owen has firsthand experience navigating the challenges that come with using technology as a switch user.
Officially Launched! – Kildare Inclusivity Festival, 11th May at The Curragh Racecourse
Festival highlights include a wide range of activities suitable for all ages and abilities. Families can enjoy the Family Fun Zone, filled with engaging activities for children and their loved ones. The Exhibition Stands & Service Provider Zone will showcase local services, supports, and organizations. Visitors can try out adaptive and inclusive sports in the Inclusive Sports Zone, while Barretstown Magic Moments offers therapeutic programs designed to bring joy to participants of all ages. The festival also features live entertainment, including a vibrant lineup of music acts, a magic and puppet show, and funfair games. Food lovers and craft enthusiasts can explore the Artisan Food & Craft Market, featuring local producers and craftspeople. For those seeking a physical challenge, Nua Healthcare Services presents the ‘Ultimate Obstacle Course’—a fun, inclusive activity for individuals, carers, siblings, family members, and advocates to enjoy together, whether in groups or solo.
Translarna™ (ataluren) Market Authorisation Not Renewed by European Commission.
The European Commission (EC) has announced that it will not renew the market authorisation of Translarna™ (ataluren) for treating nonsense mutation Duchenne muscular dystrophy. After re-examining the data, the EMA’s human medicines committee (CHMP) concluded that the effectiveness of Translarna could not be confirmed.
Dear members: MDI are currently reviewing the constitution. Register now to hear about this work and/or give your views at our online member workshop.
In line with the recent guidelines provided by the Charity Regulator to all charities operating within the sector, Muscular Dystrophy Ireland (MDI) is currently in the process of thoroughly reviewing and updating the Constitution that governs our organization.
Adult Members’ Accessible Hotel Breaks made possible through the Ollie Hickey Fund!
Muscular Dystrophy Ireland is excited to offer short hotel breaks exclusively for our adult members with the condition, made possible through the Ollie Hickey Fund! These breaks provide a chance to enjoy a short getaway in Dublin or Galway, particularly for members who may face financial or accessibility barriers to travel.
Webinar: Managing difficult behaviours: noncompliance, defiance, and emotional outbursts.
Managing difficult behaviours: noncompliance, defiance, and emotional outbursts on Wednesday 23rd April, 6:00pm with James Poysky.
Join the MDI Coffee Morning at Castletroy Park Hotel Limerick this April.
Would you like to meet other MDI members over a coffee and a chat? Members have shared that they’d love more opportunities to connect, so we’re excited to kick things off with our first coffee morning, thanks to Laura, a parent of one of our young members, who will be hosting it!
Action Duchenne Webinar Series 2025 - Coping with the Diagnosis with Professor David Schonfeld
Action Duchenne welcome’s Professor David Schonfeld, internationally renowned developmental behavioural paediatrician and regular Action Duchenne conference speaker a webinar focusing on ‘Coping with Diagnosis’, with lots of opportunity for questions.
It’s Brain Awareness Week!
MDI is a member of the Neurological Alliance of Ireland (NAI) and a partner of the Brain Awareness Week campaign.
MDI Members Receive Power Soccer Wheelchairs in Milestone Event
We are thrilled to share the highlights of a special event held at MDI Head Office on Wednesday, 5th February, where three of our members were presented with power soccer wheelchairs to support their participation in Powerchair Football. This initiative is a major step in ensuring that our members have access to the equipment they need to thrive in the sport.
The VHI Women’s Mini Marathon is open for registrations, and we are currently recruiting Team MDI!
We would love to build on the success of last year when we had 13 amazing women on our team who raised an incredible €5,508 to support our work. This year we would like to have a team of at least 20 women taking part to fundraise on behalf of MDI.
Show Your Stripes for Rare Disease Day!
Show Your Stripes is a fun way to engage neighbours, friends and the larger community on Rare Disease Day. There are so many ways to participate in the campaign. Get Creative!
28th February is Rare Disease Day!
Rare Disease Day is a globally coordinated movement dedicated to rare diseases, striving for equity in social opportunities, healthcare, and access to diagnosis and therapies for people living with a rare disease.
Apply Now: Accessible FAI Matchday Experience at Aviva!
We’re thrilled to share a fantastic opportunity, made possible through the Ollie Hickey Fund! We have season tickets for five FAI matches at the Aviva Stadium, offering an incredible matchday experience in the accessible seating area, centre-pitch location. For each game, we’ll have an application process aimed at different groups, such as young adults, groups of friends
National Service Plan 2025 – Disability Federation of Ireland summary highlighting disability-specific measures.
The HSE have published the National Service Plan 2025 that sets the course for healthcare developments in the coming year. In response, DFI has prepared a summary highlighting disability-specific measures in the Service Plan.
Programme for Government: What's in it for Disabled People?
This year’s Programme reflects the growing recognition of disability issues, thanks to strong advocacy from DFI and others, the recent election focus, and the transfer of disability functions out of the Department of Health.