On a recent episode of Disability Matters on 92.5 Phoenix FM, host John Comiskey welcomed Aisling Kennedy, Chief Operations Officer of Muscular Dystrophy Ireland (MDI), to discuss what muscular dystrophy really is, how it affects people across Ireland, and the vital work her organisation is doing to support individuals and families living with this rare and often misunderstood condition.
“It can affect anyone, at any stage of life.”
Aisling begins by explaining that muscular dystrophy isn’t just one condition — it’s a group of over 60 neuromuscular disorders that cause progressive muscle weakness. “Each condition is different,” she says, “and the progression of each varies. Some, like Duchenne or SMA, are more aggressive, while others are slower to develop. But what many people don’t realise,” she adds, “is that muscular dystrophy can appear at any stage of life — childhood, adulthood, even later years.”
Because the condition is genetic, a diagnosis often triggers a ripple effect across entire families. “If one person is diagnosed, everyone related by blood usually needs to be tested. That can be incredibly stressful,” Aisling notes. “And with long waiting lists for genetic testing and counselling, that process can easily take a year or more.”
The importance of advocacy — and access to treatment
Although there is currently no cure for muscular dystrophy, Aisling explains that new treatments can help slow down the progression of certain types, particularly SMA and Duchenne. “We have some treatments available in Ireland,” she says, “but others are still not approved here, even though they’re available in the UK and across Europe. That’s why advocacy is such a huge part of what we do — working with government and the HSE to make sure people here have the same access to treatments as elsewhere.”
Living independently with muscular dystrophy
Independent living is at the heart of MDI’s mission — but it’s not without challenges.
“Whether or not someone can live independently often depends on where they live,” Aisling admits. “Finding personal assistants, getting the right healthcare packages, accessible housing and transport — these are real barriers.”
To help bridge that gap, MDI runs a personal assistance service, an emergency support line, and a fully accessible “home from home” facility in Dublin. “It’s a safe, affordable place for members to stay when they travel for hospital appointments,” Aisling explains. “It’s fitted with ceiling hoists, assistive technology, and accessible bathrooms. It’s a huge relief for families who often can’t find truly accessible accommodation elsewhere.”
Education, employment, and inclusion
Muscular Dystrophy Ireland is also deeply involved in education and awareness.
“We run accredited school programs to help teachers and schools prepare for children with neuromuscular conditions,” Aisling says. “Simple things — like having a proper ramp, an accessible toilet, or a working lift — can make the difference between inclusion and exclusion.”
MDI also supports young people through youth and sibling programs, peer support groups, and independent living training for teenagers learning to work with their personal assistants. “It’s about confidence,” Aisling says. “About teaching people how to speak up for themselves.”
Facing diagnosis — and finding support
Perhaps the most emotional part of Aisling’s work involves supporting families at the moment of diagnosis.
“That’s the hardest part,” she says softly. “Getting that news changes everything. People react in all kinds of ways — some want all the information right away, others just need time to breathe.”
That’s why MDI’s clinical liaison officer plays such a crucial role. Based in hospitals like Beaumont and the CRC, they provide immediate support, information, and follow-up care. “They’re the bridge between the hospital and us,” Aisling explains. “They’re there when families need someone to listen, to help them take the next step.”
Building connections across Ireland
From counselling and peer networks to transport services and equipment loans, MDI’s reach is truly national. “We’re there to fill the gaps,” says Aisling. “If a family is waiting on a wheelchair, or if a parent who’s also the primary carer suddenly ends up in hospital, we step in temporarily until the HSE can arrange long-term support.”
Even after 50 years, MDI continues to evolve. “We started around a kitchen table in Galway,” Aisling smiles, “like many charities do. And now we’re a national organisation — still driven by families, still led by need.”
The challenges ahead
When asked what challenges remain, Aisling doesn’t hesitate.
“Access to timely treatments, personal assistance, accessible housing, and transport,” she lists. “And, of course, awareness. Because muscular dystrophy is rare, people — even professionals — don’t always understand it. That’s something we’re constantly working to change.”
“We exist because there are gaps in the system.”
As the conversation wraps up, Aisling reflects on what keeps her and her team going.
“At the end of the day,” she says, “we’re here because families need us. The system doesn’t always move fast enough — and that’s where we come in.”
You can learn more about Muscular Dystrophy Ireland, find support, or access information through their website at www.mdi.ie.
Follow MDI on Facebook and Instagram for updates on services, campaigns, and upcoming events.
Disability Matters airs every Thursday from 4–5PM on 92.5 Phoenix FM, with a repeat on Mondays 3AM, Tuesdays 3AM & 7AM.
Produced in collaboration with the Blanchardstown Centre for Independent Living (BCIL), the show highlights the voices, stories, and experiences of Ireland’s disability community.