MDI Quick Links

I was delighted to receive an invite from the Minister of Health Jennifer Carol MacNeil to attend the Irish Presidency Conference on Clinical Trials and Medicine Access today. The conference is essentially about how Europe can make the journey from medical research to patient access to medicines faster, more effective and more sustainable. Looking at why there can be a significant gaps between a medicine being developed/approved and patients actually getting access to it across Europe!!

ExWell Medical is a not-for-profit organisation running medically supervised exercise classes for people living with long-term conditions, including neuromuscular conditions. Classes are led by trained instructors and combine gentle aerobic, strength, core and balance work in a supportive, sociable group setting. ExWell has centres across Dublin, Leinster, Munster and Connacht, plus online classes and weekly Zoom health talks. To join, you'll need a referral from your GP or another healthcare professional.

Join us online on 14th October at 7pm for our Assistive Technology Information Webinar. Victoria Geaney from Tus Nua Occupational Therapy will discuss power mobility and the MDI Wellness Programme. Laura from AT Superstore will demo the latest devices. Niamh Bridges from Tobii Dynavox will cover eye-gaze technology for communication and independence. MDI member Catherine Keegan will share her family's experience of living with CMT. Cathy Wright from Citizens Information will explain the funding and grants available for AT. Our online peer support workshop follows on 19th October. Email tania@mdi.ie to join.

MDI School Awareness Programme

Having an understanding of Muscular Dystrophy and related neuromuscular conditions within the school setting is vital for creating a supportive and inclusive experience for young pupils and to ensure they are fully included in all aspects of school life. 

More than 60 organizations unite to strengthen awareness, registries, research, and access to care for people living with myotonic dystrophy (DM).15 September 2026, Worldwide: The Global Alliance for Myotonic Dystrophy Awareness (Global Alliance) proudly celebrates the sixth annual International Myotonic Dystrophy Awareness Day. More than 60 organizations from around the world are uniting to raise awareness, advance research, and improve care and quality of life for people living with myotonic dystrophy (DM) and their families.

Evrysdi for adults with SMA in Ireland: what to do next

MDI welcomes the significant development that reimbursement for Evrysdi (risdiplam) will be extended to a defined group of adults living with spinal muscular atrophy from 1 October 2026.

As part of Muscular Dystrophy Awareness Month, we’re delighted to highlight MDI’s successful partnership through Research Ireland’s Enterprise Partnership Postgraduate Scheme, mentoring an early-career researcher at Royal College of Surgeons Ireland (RCSI) University. This exciting partnership is helping to advance research into Duchenne muscular dystrophy (DMD) while supporting the next generation of researchers in the field.