Highlights and photos – MDI National Conference, Living Life to the Fullest, 10 November 2024, Croke Park.
Left to right: Bindu Nair, MDI Chairperson; Dr Jeff Preston, keynote speaker, and Alan Breathnach, MDI CEO.
We are delighted to share highlights and photos from MDI’s national conference, Living Life to the Fullest, which took place on 10 November 2024 at Croke Park. The conference featured two tailored programmes: one for adults living with neuromuscular conditions (NMCs), family members and friends, and key stakeholders, and another for young people aged 8 to17 years. A heartfelt thank you to all our wonderful contributors, participants and supporters for making the event a celebration of community, connection, critical analysis and positivity.
Feedback from conference participants
Conference keynote by Dr Jeff Preston and discussion with panel of MDI members
Workshop presentations
Research updates
Young people’s programme
Conference photo gallery
Acknowledging financial support
MDI National Conference 2025.
Feedback from conference attendees
Participants in our feedback survey rated their conference experience very highly:
4.6 out of 5 for the organisation of the conference, with 93 per cent rating its organisation excellent or very good.
95 per cent rated the quality of the speakers and sessions excellent or very good.
98 per cent found the duration of the conference to be just right.
100 per cent were very satisfied or satisfied with the venue.
95 per cent were very satisfied or satisfied with the food and beverages.
Here’s a flavour of what participants told us about their conference experience:
“The keynote speaker was fantastic and the Citizens Information talk reminded me that the government are not doing enough to support people living with disabilities.”
“Really enjoyed all topics… in particular, keynote speaker and session on talking to your children. Great, very experienced and knowledgeable speakers.”
“Excellent support services available, positive respectful interactions.”
“It was very warm and insightful! Thank you very much.”
“Kids thought it was really good. They enjoyed it.”
“Really enjoyed it and delighted I came.”
“A sense of community.”
“Meeting new people.”
“Great positivity - good support network.”
“Same again please.”
“Have a conference every year”.
The key things people said they took away from the day include:
“Tell your story. Take up your space.”
“Ability not disability.”
“I am not done!”
“We are not alone.”
“Mutually beneficial relationship between caregiver and the individual requiring care.”
“Co-dependent is the new independent :-)”
“Citizens Information - did not know what they offer.”
“MDI is a great community and has shown me how to thrive.”
“MD profile is increasing. Becoming more acceptable and ‘normal’ to have a disability.”
Suggestions to improve the conference include:
“Maybe more opportunity for MDI members to share experiences with one another.”
“Provide ice-breaker session at the beginning so new members can talk to those with more experience.”
Conference keynote by Dr Jeff Preston and discussion with panel of MDI members
Left to right: Annette Costello and Dr Jeff Preston
Dr Jeff Preston
Dr Jeff Preston delivered an outstanding keynote, Full of Life: Redefining worth in an ableist world, setting a compelling tone for the day. His powerful and engaging speech challenged conventional understandings of "normal" and "ability," inviting us to reflect on living life itself as an act of resistance, living beyond expectations, and embracing a life lived with and for others.
It was followed by a discussion with a panel of MDI members, facilitated by Patrick Flanagan, MDI Vice Chairperson. The panel reflected the diversity of our community, each of whom has a different background and lives with a different neuromuscular condition. Read more about our panel members’ profiles below – Eoghan Eugene Curry, Annette Costello, Conor McAuley, Dr Aoife McNicholl.
Left to right, Patrick Flanagan, Eoghan Curry, Conor McAuley, Dr Aoife McNicholl, Annette Costello and Dr Jeff Preston.
Left to right: Patrick Flanagan and Eoghan Curry.
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Eoghan Eugene Curry known as Eoghan – Eugene is for medical and legal reasons only. Nice way of telling the level of trouble I’m in. I’m 42 and famous for all the reasons medically of course. At the age 29 I was diagnosed with FSHD Type2. The first in Ireland and first person to have fascioscapular thoracic fusion, using the new bone fusion method.
My background consists of being told at the age of 16, I would never achieve my dream of racing cars or selling them. Ended up in cars sales between Dublin and Western Australia. The most satisfying parts: we’re selling cars to previous schoolteachers and the opportunity to work for Porsche Dublin. Unfortunately, I was medically retired at 37 due to an accident not MD-related. This is a very important point.
My MD is like super power I would like to share with you my fellow warriors and to the parents out there. Encourage us, please don’t wrap us in cotton wool (my mother who is in the crowd would have done this – self-admitted). We are adaptive, creative, problem solvers, resourceful. The challenges we face give us the superpowers of empathy and social awareness of others in similar situations. These superpowers helped me later in my career and to this day. Please feel free to say hi and reach out if you have FSHD. I’m a member of MDI Advocacy Committee. You can contact me through MDI by emailing learningAndDevelopment@mdi.ie.
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I was unexpectedly diagnosed with a limb girdle muscular dystrophy in 2006 and have been using an electric wheelchair since 2015. I was appointed by the Minister of State with responsibility for disability to the Disability Stakeholders Group (“DSG”) 5 in 2018 and to DSG 6 in 2021. In this role I have appeared as a witness before the Joint Oireachtas Committee on Disability Matters regarding the Public and Political Participation of Disabled People in 2021 and 2022 and also as a witness in my own right in 2024 to discuss “How have my human rights been supported?”
In 2022, I featured on a podcast about living with LGMD 2B, hosted by Dr Anna Mayhew Consultant Research Physiotherapist, who leads on the research at John Walton Muscular Dystrophy Research Centre at the Centre for Life in Newcastle on Tyne. I spoke about being part of a natural history study and the benefits taking part, as well as what is important about managing my condition.
I have over 28 years’ experience in corporate governance and was a Fellow of the Chartered Governance Institute prior to my retirement on health grounds from a Top 5 law firm in June 2018.
Conor McAuley
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I’m a content creator and a disability activist! With a background in media, I’ve created my own content on social media and worked with various organisations on social media campaigns. But beyond that, I’m a dedicated disability activist. I’ve worked closely with the National Youth Council of Ireland, the Irish Wheelchair Association (IWA), and the Independent Living Movement of Ireland. I have Duchenne Muscular Dystrophy and have been a member of MDI since I was a kid! Now I’m a member of MDI Advocacy Committee.
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I am Assistant Professor of Psychology and was previously the Universal Design Coordinator in Dublin City University. I’m a board member of Independent Living Movement Ireland and member of the National Task Force for Digital and Assistive Technology in the HSE (Health Services Executive). As a disabled person, I’ve been involved in advocacy campaigns with the Irish Wheelchair Association on accessible housing and with the government on the UN Convention on the Rights of Persons with Disabilities. I have SMA – spinal muscular atrophy.
Workshop presentations
Dr David Schonfeld
Talking to your child about muscular dystrophy and related conditions – Dr David Schonfeld, developmental-behavioural paediatrician at Children’s Hospital Los Angeles and Professor of Clinical Paediatrics at the University of Southern California Keck School of Medicine in Los Angeles, CA, USA.
Micha Paalman, Yumen Bionics
Technology reducing barriers - Kyran O'Mahoney, founder and former CEO of Inclusion and Accessibility Labs, shared his passion for technology and how he uses it in his everyday life to overcome his impaired vision. Participants also got to see a demo of arm exoskeleton for people with MD who have reduced arm mobility, presented by Micha Paalman, Yumen Bionics, the Netherlands.
Cathy White, Citizens Information
Update on entitlements and supports - Cathy White, Citizens Information. The workshop offered insights on how Budget 2025 may impact on your financial and social benefits and the new Work and Access Employment Programme.
Download PowerPoint presentation here
You can also find out about the Work and Access Programme here.
Research updates
We were pleased to welcome updates (outlined below) from researchers who have collaborated recently with MDI. A crucial aspect of these studies was the active involvement of people with lived experience, caregivers, and the public through 'Patient and Public Involvement' (PPI), ensuring their voices were integral to the research process.
Dr Niki Nearchou
The psychosocial needs of adults living with neuromuscular conditions. Dr Niki Nearchou, Associate Professor, Director of Research Doctoral Programme in Clinical Psychology, University College Dublin.
Dr Laura Gallagher shares good news about the approval of funding to develop and evaluate a psychology and neuropsychology service for children and their families. (See below)
More than Motor: Developing an International Model of Psychosocial Care for Paediatric Neuromuscular Conditions. Dr Laura Gallagher, Senior Clinical Neuropsychologist, shared excellent news with conference participants regarding the approval of €670,000 to develop and evaluate a psychology and neuropsychology service for children and their families attending Children’s Health Ireland (CHI) tertiary neuromuscular clinics. It will involve collaboration between psychology in CHI Neuromuscular Clinic, Muscular Dystrophy Ireland and the University College Dublin (UCD) Resilience and Health Laboratory.
Siobhán O Shea
Supporting transitions to adulthood resources (STAR) project. Siobhán O’Shea, Senior Occupational Therapist, Master’s Research in the Discipline of Occupational Therapy, Trinity College Dublin.
Exploring health-related quality of life of adults with neuromuscular disorders. Brona Mulligan, Master’s Research in Health Psychology, University of Galway.
Young people’s programme
Quiet on set! Scott Peacock and Layla Dixon making a movie on the the young people’s programme . Designed for ages 8 to 17, the workshop offered a fun and creative experience where participants had a chance to explore everything from acting and directing to cinematography and camera operation.
Take 5! Molly Dixon, one of the movie-making crew .
And… action! Film crew member, Cathal Briscoe.
Conference photo gallery
Click to enlarge and for more information.
Financial support
MDI acknowledges the financial support of the HSE. The event is also kindly supported by independent grants from PTC Therapeutics and Roche who have had no editorial influence over the content.
MDI National Conference 2025
Mark your calendars for November 2025 and don’t miss the chance to connect, share, and learn at our 2025 National Conference! Stay tuned for the exact date and venue details, which will be announced in the new year.