National Conference 2025
Adults’ Programme
We are excited to welcome two esteemed keynote speakers, who will share their expertise and perspectives on the theme of Connection, exploring its significance for people living with neuromuscular conditions and their families. A panel of MDI members will then respond to their insights, fostering a dynamic and engaging discussion.
Keynote speaker - Dr Jeff Preston
Jeff Preston, Ph.D., is an Associate Professor and Chair of Disability studies at King's University College @ Western University in London, Ontario. A long-time advocate and motivational speaker, Jeff started fundraising for Muscular Dystrophy research when he was 3 years old and was later a 2-time Ontario poster child and the first Canadian campaign assistant for Muscular Dystrophy Canada. His annual golf tournament, the Jeff Preston Celebrity Golf Tournament, raised over $1.4 million for MD research before being shuttered by COVID. A committed advocate and public intellectual, Jeff is a past member of the Accessibility Standards Advisory Committee, advising on the creation of the Accessibility for Ontarians with Disabilities Act. Jeff is also regularly sought in media, with appearances on radio and television news, including national television shows like Canada TV’s, The National and CBC Marketplace.
Keynote speaker - Senator Tom Clonan
Tom Clonan was elected to Seanad Éireann in March 2022. He is a fully independent senator – with no links to any political party. Tom's mission – as a Trinity College Dublin senator – is to hold Government to account. For over 25 years, he has been a tireless campaigner for the rights of others – as a parent campaigning for the rights of disabled children, adults and older people, as well as an army whistleblower on gender-based violence, and a strong advocate for Irish military neutrality. Tom’s son, Eoghan, has recently graduated with a BA (Hons) in Social Science from DBS Dublin Business School. Eoghan has a neuromuscular condition and is a wheelchair user. As Eoghan’s carer, Tom understands the challenges people with disabilities face. His primary goal in office is to campaign for the 600,000 people in Ireland with disabilities and those who care for them in the fight for equality.
MDI member panel: responding to keynote speeches
My name is Sara Hickey. I’m a member of MDI’s Services Committee. I live in Dublin and I am Mam of five children. Back in November 2017, my then six-year-old son Kyle was diagnosed with Duchenne muscular dystrophy. My world literally stopped that day and my heart broke into a million pieces. Our journey with Duchenne over the past eight years has been quite eventful. Luckily, we discovered Power soccer football three years ago and have never looked back. It has given Kyle a purpose. He has always loved to play football. Now unfortunately, Duchenne has now taken Kyle off his legs but he still gets to play soccer, just in a different way. The Power soccer has not only been a huge help to Kyle but has had a massive impact for myself, getting to meet other parents and relate to situations that are happening in our lives. Also, the social aspect is immensely important.
David Kennedy is a member of MDI’s Advocacy Committee and is based in Dublin. Living with facioscapulohumeral muscular dystrophy (FSHD), he brings lived personal experience to advocacy efforts. David is passionate about raising awareness, fostering inclusion, and empowering others through shared stories and community engagement. “My FSHD diagnosis has given me a renewed sense of purpose – to advocate, connect, and inspire others facing similar challenges.”
Andrew O'Reilly is a member of MDI’s Advocacy Committee and is living with Charcot Marie Tooth (CMT). Andrew is a trainee psychotherapist and has a keen interest in the psychological effects of disability. Breaking down stigmas surrounding disability is an ambition of his and he believes the first step is raising awareness. Raising awareness will help break down barriers and promote an inclusive society.
Adults’ workshops
Conference workshops will blend presentation with interactive engagement.
Choose 1 from:
Bridging the gap: connecting people, clinicians and researchers - panel of clinicians and researchers (more detail below).
Navigating unchartered waters: supporting family wellbeing along the treatment journey – Dr Laura Gallagher
The opportunities and challenges of assistive technology – Dr Aoife McNicholl
WORKSHOP 1: Bridging the gap: connecting people, clinicians and researchers
This session is designed to create an open and engaging space where people living with neuromuscular conditions and family members can connect directly with clinicians and researchers. Speakers will give a short talk on a topic of their choice. This will be followed by a panel discussion and Q&A, facilitated by Dr Ashling Holland, Chair of MDI’s Research Committee and Board Member.
Speakers will include:
Professor Sinéad Murphy, Consultant Neurologist at Tallaght University Hospital, Clinical Associate Professor, Trinity College Dublin and Clinical Lead of the HSE National Clinical Programme for Neurology.
Professor Orla Hardiman, Professor of Neurology, Trinity College Dublin and Consultant Neurologist, Beaumont Hospital.
Professor Imran Sulaiman, Consultant Respiratory Physician, Beaumont Hospital, Honorary Clinical Associate Professor, Royal College of Surgeons in Ireland and adjunct Professor of Medicine, Division of Pulmonary, Critical Care, and Sleep Medicine, NYU Grossman School of Medicine, USA.
A Reghan Foley, Senior Research Physician, Neuromuscular and Neurogenetic Disorders of Childhood Section, NINDS, National Institutes of Health, USA; Adjunct Professor, University College Cork School of Medicine, Cork.
TOPIC: From diagnosis to discovery: How collaboration drives progress in Rare Neurological Diseases
Professor Murphy will discuss rare neurological and neuromuscular diseases in Ireland, drug development for rare genetic diseases, using hereditary transthyretin amyloidosis (ATTRv) as an example and some of the benefits that come from multi-site registries and collaboration.
Sinéad Murphy is a Consultant Neurologist at Tallaght University Hospital (TUH) and Clinical Associate Professor in Trinity College Dublin. Since March 2024 she has been Clinical Lead of the HSE National Clinical Programme for Neurology. After completing Neurology training she was awarded the HSE Dr Richard Steevens Scholarship and subsequently an NIH Rare Disease Inherited Neuropathy Consortium Fellowship to complete a fellowship in inherited neuropathies in the MRC Centre for Neuromuscular Diseases, UCL National Hospital for Neurology and Neurosurgery, Queen Square, London. She has particular subspecialty interest and expertise in inherited neuropathies and ataxias, runs dedicated Neuropathy and Neuromuscular clinics and co-leads the National Ataxia Clinic in TUH. She is lead of the Irish site for the European Reference Network in Rare Neurological Diseases (ERN-RND) and chaired the Neurology sub-group of the HSE Amyloidosis Working Group which developed the Amyloidosis Model of Care
TOPIC: Running a successful population-based registry and its benefits
Professor Hardiman will speak about running a successful population-based registry; the benefits that this brings from both a research and a clinical service development perspective; how this in turn attracts interest in a rare condition and can attract clinical trials of new compounds; and how it fosters links with researchers and those affected by the condition across the world.
Orla Hardiman, BSc, MB, BCh, BAO, MD, DSc FRCPI, FTCD, MRIA is Professor of Neurology at Trinity College Dublin, and a Consultant Neurologist at Beaumont Hospital. She leads a large clinical and research group focused on motor neurone disease (MND) and related disorders. She is a founder of the Neurological Alliance of Ireland, and the recipient of a number of national and international awards including the Health Research Board Impact Award (2023) and Science Foundation Ireland Researcher of the Year Award (2022). Her research work is funded by Research Ireland, the Health Research Board, the American ALS Association, the British MND Association, the Irish MND Association, and the charity Research Motor Neurone.
Dr Ashling Holland is a published international biomedical scientist with expertise in muscular dystrophy. Her scientific research career over the past nearly 15 years has focused on multiple types of muscular dystrophy. Ashling is a founding scientist and Director of Preclinical Development at PepGen, where she leads the preclinical development of their Duchenne muscular dystrophy and myotonic dystrophy programmes. In 2020, she joined the Board of Directors of MDI. She serves as the Chair of MDI’s Research Committee and is a member of its Neuromuscular Disease Registry Advisory Group. Ashling is passionate about supporting the MD community and contributing to MDI's mission of supporting people with MD.
TOPIC: Respiratory Supports in Neuromuscular Disease
Professor Sulaiman will speak about indications, assessments and tools to provide respiratory support in neuromuscular conditions.
Professor Imran Sulaiman is a Consultant Respiratory Physician in Beaumont Hospital, Honorary Clinical Associate Professor with the Royal College of Surgeons in Ireland (RCSI) and Adjunct Professor in the Division of Pulmonary, Critical Care, and Sleep Medicine at NYU Grossman School of Medicine, USA. He received his medical degree from RCSI and completed internal medicine residency, respiratory higher specialist training, and PhD in Ireland. Professor Sulaiman subsequently completed a pulmonary and critical care fellowship at NYU developing further skills and knowledge in sleep and ventilation. On returning to Ireland, he helped set up a ventilation clinic in Beaumont Hospital providing respiratory support for patients with muscular dystrophy and other neuromuscular conditions. He is a member of MDI’s Research Committee.
TOPIC: Connecting for Care
Connecting to networks of individuals living with neuromuscular diseases and their families internationally can serve as an invaluable resource for sharing experiences and advice. Neuromuscular specialists internationally are endeavoring to ensure that expert care recommendations are made available via open-access resources so that this information is on hand for affected individuals, their families and for medical teams. Having these connections to others living with the same condition, connections to resources for expert care recommendations and connections to experts can optimise care and quality of life.
Dr A Reghan Foley is currently a Senior Research Physician, Neuromuscular and Neurogenetic Disorders of Childhood Section, NINDS, National Institutes of Health (USA), and Adjunct Professor, at University College Cork School of Medicine, Cork. She sees patients with congenital muscle diseases in clinical research studies. She trained in paediatric neurology, adult neurology and neuromuscular diseases at the Children’s Hospital of Philadelphia and Hospital of the University of Pennsylvania. She completed a neuromuscular clinical research fellowship and MD Research degree at the Dubowitz Neuromuscular Centre, UCL Institute of Child Health and Great Ormond Street Hospital, London. Dr Foley worked at the Children’s University Hospital, Temple Street and at the CRC, Dublin (2013-2014).
WORKSHOP 2: Navigating unchartered waters: supporting family wellbeing along the treatment journey
Medical and surgical decisions for a child with a neuromuscular condition are rarely just medical – they touch every part of family life. This workshop will explore the psychological impact of treatment and intervention choices, not only for the child but also for parents and siblings. Drawing on over 15 years’ experience in paediatric neuropsychology, Dr Laura Gallagher will provide a compassionate, practical space to reflect on the pressures, hopes, and emotions that accompany the medical journey.
Speaker: Dr Laura Gallagher
Dr Laura Gallagher is a Chartered Clinical Neuropsychologist with over 15 years of postgraduate experience in paediatric neuropsychology. She has worked across community, hospital, and private healthcare settings, specialising in the assessment and therapeutic support of children and young people with neuromuscular conditions.
WORKSHOP 3: The opportunities and challenges of assistive technology
In the first part of the session, we will introduce the concept of assistive technology (AT) and cover some examples. We will then explore some of the ways that AT can support a person in their everyday life and some of the associated benefits. We will also cover some of the challenges of AT use and how person-centred models should be applied to promote continued use and engagement.
In the second part of the session, I will demonstrate some freely available AT solutions and attendees can give these a try. I will also demonstrate the AT Hive, a resource developed by the Association for Higher Education Access and Disability and give attendees the opportunity to discover what AT is most suitable and appropriate to them!
There will be opportunities for discussion and reflection throughout the session.
Speaker: Dr Aoife McNicholl
Dr Aoife McNicholl is an Assistant Professor of Psychology and was previously the Universal Design Coordinator in Dublin City University. Her research areas of interest are assistive technology, independent living and the psychosocial impact of illness and disability. Aoife is a board member of Independent Living Movement Ireland and member of the National Task Force for Digital and Assistive Technology in the HSE. As a disabled person, she has been involved in advocacy campaigns with the Irish Wheelchair Association on accessible housing and the government on the UNCRPD.
