New Resources & Updates for Myotonic Dystrophy, Beckers and Duchenne muscular dystrophies
New resources are now available for individuals and families affected by muscular dystrophy. The Myotonic Dystrophy Foundation has released a heart health guide for those living with DM1 and DM2. A comprehensive Becker Muscular Dystrophy Guide for Families is now accessible in English, offering vital support for the global BMD community. Additionally, Ireland’s first national care pathway for Duchenne muscular dystrophy (DMD) has been approved and will soon be published by the HSE — a key milestone toward improved care and advocacy.
Shaping the Future: Top Research Priorities Chosen by the MDI Community
Last November, we emailed everyone on our dataset asking them to prioritise a list of research themes. The survey was also handed out at the MDI conference. Thank you to everyone who took the time to respond. Below is a graph showing the ranking of participants priorities.
Children’s and Young People’s Research Advisory Group
The All-Ireland Rare Disease Interdisciplinary Research Network (RAiN) brings together a broad range of interdisciplinary professionals and patient representatives with an interest in research. As part of their efforts, they have established the Children’s Research Advisory Group (CRAG), a platform for children and young people with rare diseases to have a voice in guiding research. CRAG aims to ensure that research is relevant to the needs of young people by actively seeking their advice on what researchers do and how they approach their work.
You can still join as a virtual participant for the 2025 VHI Women's Mini Marathon in aid of MDI
You can still join as a virtual participant for the 2025 VHI Women's Mini Marathon in aid of Muscular Dystrophy Ireland! Lace up your running shoes and join us for a fantastic cause. Join our team on iDonate when prompted as part of registration!
MDI receive grant for special needs stroller from The Hospital Saturday Fund at a special reception in Dublin.
Twenty-six Irish charities received donations from The Hospital Saturday Fund at a special reception in Dublin recently. In total, over €122,000 was donated to the medical charities and organisations at the event, which was hosted by Lord Mayor of Dublin Emma Blain. Among the beneficiaries was Muscular Dystrophy Ireland who were awarded a grant to support a special needs stroller.
MDI Research Collaborations 2024: Highlights from Groundbreaking Studies with Irish Universities
Last year, MDI collaborated with the University of Galway, University College Dublin and Trinity College on three different research studies. A heartfelt thank you to everyone who participated in these studies. We are pleased to share the results of two of these studies below. The researchers from all three projects would like to extend their gratitude to everyone who took part in their study. Without your support, these projects would not have been possible.
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.
MDI is honoured to be a beneficiary of the Johnny Matthews Golf Classic.
MDI is honoured to be a beneficiary of the Johnny Matthews Golf Classic again this year. The event takes place at the beautiful Faithlegg Hotel in Waterford, and interested parties are invited to contact organiser Jim Kealy on 0857767362 to reserve a tee time.
🔄 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.
Join Our Community Connections Programme.
We are opening our peer connections programme to all members. We hope to pair adult member living with a neuromuscular condition with other adult’s members, families together, , and partners with other partners who would like to connect in.
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!
NATIONAL WEBINAR: Supporting Secondary School Students with Muscular Dystrophy and Related Neuromuscular Conditions
The webinar will include inputs from members of the Muscular Dystrophy Ireland team, a young adult living with muscular dystrophy and the following health professionals with specialisms in neuromuscular conditions: clinical psychologist, occupational therapist and physiotherapist.