Update on Duvyzat™ (givinostat) for Duchenne Muscular Dystrophy
Duvyzat™ receives positive recommendation from the EMA’s CHMP for conditional approval in DMD.
Click to read what this could mean for families and what happens next.
The Socio-Economic Impact of Living with a Rare Disease for Families of Children with Rare Diseases
Caring for a child with a Rare Disease comes with financial, social, and emotional challenges. Share your experiences in a 30-min survey. Your voice matters—help shape better support systems.
Parent Peer Support Groups: Starting This May
Muscular Dystrophy Ireland is introducing a new Parent Peer Support Group series, facilitated by Consultant Clinical Neuropsychologist Dr Laura Gallagher. These online sessions offer a confidential, supportive space for parents and guardians to connect, reflect, and share experiences relevant to their child’s stage of life.
Ireland V Senegal at the Aviva - Apply now!
We’re thrilled to bring you another fantastic matchday opportunity, made possible through the Ollie Hickey Fund! We have accessible seating tickets for the upcoming FAI match at the Aviva Stadium, offering a brilliant view from the centre-pitch area.
![[Watch] MDI Congenital Muscular Dystrophies: optimising care and preparing for clinical trials](https://images.squarespace-cdn.com/content/v1/63c138561d3afd3c27c17d5d/1747017856751-H9HDECBNBON6ZV0WL2W1/Screenshot+2025-05-12+033852.png)
[Watch] MDI Congenital Muscular Dystrophies: optimising care and preparing for clinical trials
We are delighted to share a video of Dr A Reghan Foley’s presentation at MDI’s CMD Community Gathering which took place in August 2024. Our warm thanks to Dr Foley for her generosity in sharing her knowledge and expertise! The community gathering was an opportunity for people living with any of the congenital muscular dystrophies – including Collagen VI-related dystrophies, LAMA2-related dystrophies, LMNA-related congenital muscular dystrophy, alpha-dystroglycanopathies and SELENON-related dystrophy – and their families to connect as a community and learn together.
The 5th Annual Johnny Matthews Golf Classic raising support and awareness for four different charities
The 5th Annual Johnny Matthews Golf Classic will take place in Faithlegg Golf Club on Saturday 5th July 2025, raising support and awareness for four different charities – Autism Friendly Waterford, Cystic Fibrosis Waterford, Muscular Dystrophy Ireland and Transplant Football Ireland. The response to date has been fantastic, which reflects the admiration and affection with which the Waterford Football Family and Golfing Family have for Johnny.
![[Watch] The MDI Charcot-Marie-Tooth Community Gathering](https://images.squarespace-cdn.com/content/v1/63c138561d3afd3c27c17d5d/1747018223902-NQ21X6SQGJUWV5HEZ9UD/Screenshot+2025-05-12+034951.png)
[Watch] The MDI Charcot-Marie-Tooth Community Gathering
We are delighted to share a video of two presentations at our Charcot-Marie-Tooth Community Gathering which took place in October 2023. The community gathering was an opportunity for people living with CMT and their families to connect as a community and learn together. A big thank you to Rebekah Knight and Maureen Bradley for generously sharing their expertise and experiences! Rebekah tells us about the CMT Exercise Video Series that she developed and shares her guidance, wisdom and learning, followed by discussion. Maureen shares her learning and experiences on living well with CMT.
We are delighted to announce the launch of the MDI Assistive Technology (AT) Support Service.
The Assistive Technology support service offers individualised support to members with a neuromuscular condition by providing them with valuable information, support, and advocacy on how to secure smart technologies that can assist members to improve challenges faced in their everyday lives. Our aim is to create a supportive environment where individuals with a neuromuscular condition can thrive and achieve their full potential. People with disabilities face a variety of challenges be it at home, in education, employment, healthcare, social isolation, independent living and funding.
RevUp 2025: Motorcyclists take to the road in a 3 day mystery tour on May 3rd to rasie money for Irish Wheelchair Association.
To date, funds raised from RevUp 2018 - 2024 were used to fund three minibuses for a school and two sports clubs that cater for young people with disabilities as well as three powersoccer chairs recieved by MDI members, eight basketball wheelchairs and a hand cycle for twelve young people who can now participate and enjoy the sport that they love.
Introducing Our New Wellbeing Programme with Siel Bleu
Muscular Dystrophy Ireland (MDI) is delighted to launch a new pilot wellbeing programme in partnership with Siel Bleu Ireland, made possible through the Ollie Hickey Fund. This unique initiative is designed for both children and adults living with neuromuscular conditions. It brings together a multidisciplinary team of physical trainers, physical therapists, and nutrition professionals, all focused on supporting participants to live well through safe, adapted, and personalised approaches to wellness.
Webinar: Neurodiversity in Duchenne
We wish to draw your attention to a webinar coming up with Action Duchenne: Neurodiversity in Duchenne on Monday 12th May, 6:00pm with James Poysky.
🧠 HSE Project: Improving Care for People with a Neurological Condition
The HSE is working on a new plan (called an integrated approach) to help improve care for people with a neurological condition. A neurological condition is when the brain, spinal cord, or nerves aren’t working properly. Some examples include Parkinson’s disease, epilepsy, head trauma, multiple sclerosis, motor neurone disease, headache (and migraine). We want to hear from people who use these services—patient and service user partners — so we can help improve care together.
🔄 A.T. Tuesday: GATHER 2025 Takes Place This May
This is a place where staff from further and higher education can come together about Assistive technology and share experiences, insight and tips about AT. Over the three days on May 27th, 28th, and 29th, they will have presentations, demonstrations and discussions that will explore:
Help Drive Positive Change: Join MDI’s Advocacy Committee.
MDI’s Advocacy Committee brings together people with lived experience of muscular dystrophy and related neuromuscular conditions – people living with the conditions and family members – to advocate for positive change in society on areas that affect the lives of people living with neuromuscular conditions and to inform the development of MDI’s services.
Exciting announcement: MDI's National Conference will be held on Sunday, December 7, 2025 at Croke Park!
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!
Strengthening Global Ties: MDI Joins FSHD Europe, Advances Registry Work, and Supports Patient Voice in Access to Treatments
MDI has joined FSHD Europe, a key alliance supporting patients with facioscapulohumeral muscular dystrophy across the continent, aiming to improve diagnosis, care, and treatment access. We also recently took part in the TREAT-NMD Annual Curators Meeting, gaining valuable insights as we continue to develop a national neuromuscular registry for Ireland. Lastly, MDI highlights the role of patient organisations in Health Technology Assessments (HTAs) — a crucial step in securing access to new treatments. We may seek patient input for upcoming HTA submissions, so stay tuned for future opportunities to share your voice.
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.