Judith Evers Ph.D. I am a neuroscientist; I am also a mother to an adorable son who happens to have TSC. As part of my work as a neuroscientist, I presented at Neuroscience 2024 in Chicago this October. At the same time, I used the opportunity to get an update on the TSC space and would like to tell you a little about what I learnt about research in TSC while I was there. Poster presentation at Neuroscience 2024 To give you some background Neuroscience is a conference organised every year by the Society for Neuroscience, it attracts 20,000 –...Read More
Technological advancements in TAND identification and treatment will also be discussed at the TSC Ireland Annual Conference on October 12th. A self complete mobile phone app version of the TAND Checklist has been developed which, it is hoped, will reduce the identification gap of TSC-associated neuropsychiatric disorders. The app will also incorporate a toolkit of consensus clinical guidelines for identification and treatment of TAND. Six distinct levels of TAND (shown in the digram below) have been described by the TAND Consortium. Below is a presentation by Liesbeth De Waele with an update on the progress of the project (17 minutes).Read More
Mary Vasseghi is a Ph.D. researcher at Trinity College Dublin and FutureNeuro and is supervised by Prof. Colin Doherty. She is conducting an in-depth research project on Tuberous Sclerosis Complex (TSC) in Ireland, which involves a widespread clinical audit as well as recommendations for future improvements in diagnosis, treatment and multidisciplinary care. This research estimates that “there should be approximately 600 individuals with a diagnosis of TSC in the Republic of Ireland.” Vasseghi-2024-Widespread-service-fragmentation-foDownloadRead More
‘Stepping into the shoes of young people & families with rare renal disorders moving between child and adult services.’ This research project is being undertaken Melissa Kinch based in CHI Crumlin and UCD as part of her PhD project. “We are looking for volunteers living with a rare kidney disease (including TSC) to share their experiences of moving between child and adult health services who are:– Young people aged between 18-24 years old Parents/caregivers of young people whohave moved from child to adult services” -We also wish to recruit young people age 12-17 and parents/caregivers to look at their experiences...Read More
An exciting opportunity to take part in TSC specific research! Dr Stacey Bissell is an Assistant Professor in the School of Psychology, University of Birmingham. She has a specific research background in tuberous sclerosis complex and specialises in sleep-focused and behavioural research with children with TSC, but also conducts research that focuses on caregiver wellbeing and family lived experiences. She is leading this research project which is open to Irish TSC families. See further details below: Understanding caregiver experiences of sleep management difficulties inindividuals with tuberous sclerosis complexAims of the studyThe main aim of this study is to document current...Read More
January 2024 Issue Current Issue Table of Contents: Epilepsy & Behavior 樂威壯 (epilepsybehavior.com) Some articles in the above issue are available for free as Open Access.Read More
Understanding the impact of tuberous sclerosis complex: development and validation of the TSC-PROM | BMC Medicine | Full Text (biomedcentral.com)Read More
Background: Rare diseases (RDs) are often complex, serious, chronic and multi-systemic conditions, associated with physical, sensory and intellectual disability. Patients require follow-up management from multiple medical specialists and health and social care professionals involving a high level of integrated care, service coordination and specified care pathways. Designing rare disease care pathways in the Republic of Ireland: a co-operative model | Orphanet Journal of Rare Diseases | Full Text (biomedcentral.com)Read More
Dr Stacey Bissell BSc, MRes, PhD Dr Stacey Bissell is an Assistant Professor in the School of Psychology, University of Birmingham. She has a specific research background in tuberous sclerosis complex, helping to develop guidelines and recommendations for TSC-Associated Neuropsychiatric Disorders (TAND) as part of the international TAND consortium. She specialises in sleep-focused and behavioural research with children with TSC, but also conducts research that focuses on caregiver wellbeing and family lived experiences. Mon 6th Nov; 7.00pm – 7.45pm (20-minute presentation and 25-minute Q&A) This webinar will introduce the importance of sleep, understanding sleep in the context of TSC (e.g. epilepsy,...Read More
TSC Ireland was established in 2015 and registered as a charity later that year. The founding members were parents of young children with TSC who recognised the need for an Irish organisation that would support, inform and advocate for the TSC community here.
