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We’re busy behind the scenes preparing Muscular Dystrophy Ireland’s Shared Voices, Shared Strength Conference on Saturday 21 November at Croke Park. With a fantastic lineup of speakers and plenty of engaging discussions in store, it promises to be an informative and impactful event. Save the date! 

MDI were delighted to team up with Barretstown for our third annual Family Summer Camp. From the 15th to the 17th of May, we welcomed 30 families, totalling 140 campers, for a weekend full of laughter and connection.

MDI offers short-term counselling for individuals and family members, with a panel of accredited, Garda vetted counsellors and therapists supporting children, adolescents, and adults. The service includes talk-based counselling and psychotherapy, play therapy for younger members, and creative arts therapies for those who find it difficult to put thoughts and feelings into words. Sessions are generally delivered online or by phone, so support is accessible no matter where you live.

The European Commission has granted marketing authorisation for Itvisma (intrathecal formulation of onasemnogene abeparvovec, developed by Novartis) for the treatment of adults and children aged 2 years and older living with 5q spinal muscular atrophy (SMA). The European Commission’s decision follows the positive opinion adopted by the Committee for Medicinal Products for Human Use (CHMP) in April 2026. 

Every July, the world comes together to celebrate Disability Pride Month, a time to honour the lives, experiences, and identities of disabled people. While it may not be as widely known as other awareness months, Disability Pride Month has been growing in significance since it began with the first Disability Pride Parade in the UK and Ireland held in Belfast in 2014.

MDI is proud to support the Neurological Alliance of Ireland’s (NAI) Pre-Budget 2027 Submission, which was launched on 24 June.

We are incredibly grateful to have received two Strike Force Power Soccer chairs for our club through funding provided in conjunction with MDI and The Lords Taverner’s. This generous support means so much to our club and to all of our players. 

I still remember very clearly the day I was first diagnosed with FSH muscular dystrophy by the neurologist in Beaumont Hospital. As I left the consultation, I genuinely felt that I was on my own and unsure how to navigate what lay ahead. Just as I was about to leave the hospital, Dr. Lefter called me back to introduce me to Sinead as the Clinic Liaison Officer with Muscular Dystrophy Ireland. After spending time with her that morning, I left Beaumont in a completely different frame of mind – reassured, supported, and confident that I was not alone. 

Each year, Muscular Dystrophy Ireland runs family weekends at Barretstown — and there are few better ways to capture what they mean than through the eyes of the families who attend. This May, Sam and his family joined us for their very first weekend, and his mum, Ciara shared a beautiful video of their few days away. With her kind permission, we're delighted to share their story.

Both of our recent national webinars for school staff are now available to watch online. Run in partnership with Education Support Centres Ireland (ESCI), the two-part series was created to help primary and post-primary educators better understand, welcome and support students living with muscular dystrophy and related neuromuscular conditions. Whether you missed the live sessions or would like to revisit them, you can now watch both recordings in full.

Una Ennis reflects on her first interaction with MDI: “It was a couple of days later [after receiving her son's diagnosis] when I made that call to MDI. Sinead [CLO] answered the phone. I can barely get the words out,”