Muscular Dystrophy Ireland is delighted to invite you to our Congenital Muscular Dystrophy Community Gathering in Dublin on Saturday 10 August. It will be opportunity for people living with congenital muscular dystrophies and their families to connect as a community and learn together. We welcome families, young people and adults living with any of the congenital muscular dystrophies including Collagen VI-related dystrophies, LAMA2-related dystrophies, LMNA-related congenital muscular dystrophy, alpha-dystroglycanopathies and SELENON-related dystrophy.
A national youth club for under 18’s with all neuromuscular conditions and siblings will take place at the same time as the adult programe. We'll organise fun activities relevant to the ages of participants who register.
We hope you can join us!
Where: In person at Muscular Dystrophy Ireland, 75 Lucan Road, Chapelizod, D20 DR77.
About the speakers
Dr A Reghan Foley is a Senior Research Physician within the Neuromuscular and Neurogenetic Disorders of Childhood Section, NINDS, National Institutes of Health, Bethesda, Maryland, USA. She received her M.D. from Georgetown University School of Medicine and completed her paediatrics training at Miami Children’s Hospital and fellowship training in paediatric neurology, adult neurology and neuromuscular disorders at the Children’s Hospital of Philadelphia and the Hospital of the University of Pennsylvania. Dr Foley then completed a neuromuscular clinical research fellowship at the Dubowitz Neuromuscular Centre, UCL Institute of Child Health and the Great Ormond Street Hospital, London and an MD Research degree [MD(Res)] at the University College London. She then worked as a Neurology Consultant at the Children’s University Hospital, Temple Street, Dublin and at the Central Remedial Clinic, Dublin. Dr Foley is now based at the National Institutes of Health, Bethesda (USA), where she sees genetically undiagnosed patients with congenital onset neuromuscular conditions, and follows children with congenital myopathies and congenital muscular dystrophies via various natural history studies. She has served as an investigator for Phase 1 clinical trials in the COL6-related dystrophies, LAMA2-related dystrophies, MTM1-related myopathy, and giant axonal neuropathy. Dr Foley has received a Fulbright Scholar award which has enabled her to currently work onsite at the University College Cork at UCC’s INFANT Centre and the Department of Anatomy and Neuroscience on research aimed at identifying and validating disease-specific biomarkers in patients with COL6-related dystrophies and LAMA2-related dystrophies.
Patrick S Cassidy is a student at Trinity College Dublin studying pharmacy. He lives with Collagen VI muscular dystrophy.
Andrea Tobin is a Clinical Specialist Occupational Therapist working as part of the specialist neuromuscular service in Children’s Health Ireland and CRC. She has over 18 years’ experience working with children with neuromuscular conditions in Ireland. Andrea has presented at international conferences on the role of Occupational Therapy and neuromuscular conditions. She was a member of the project, Integrated Pathway for Children and Families with Neuromuscular Disorders in Ireland. Andrea completes functional assessments with children attending the service. She has a special interest in family centred care and promoting participation and engagement in everyday activities for the children within the environments in which they live.
You can find out more and book your place here
Please note the following booking deadlines:
Youth club – 15 July
Adult programme – 5 August.