TSC Ireland Conferences 2025
From Left to Right: Dr. D. Brennan, Prof. A. Green, Prof. C. McCarthy, Dr. C. Kingswood, Dr. C. Greene, Prof. P. de Vries, Dr. M. Vasseghi, Dr. J. Evers, Dr. D. Ferguson, Dr. C. Behan, Prof. C. Doherty, Ms. A Gough.
The 2025 TSC Conferences, organised by the TSC team in St. James’s Hospital and TSC Ireland, was a warm, informative and hopeful event. It showcased the dedication of clinicians and researchers, highlighted the strength of the TSC community, and pointed toward a more connected and coordinated future for TSC care in Ireland.
Day 1 - Healthcare Professionals & Researchers
The first day focused on the latest developments in TSC care and research. It was attended by over 60 healthcare professionals across several clinical disciplines.
The day began with an important reminder of why this work matters — a powerful family perspective shared by Dr Judith Evers, (parent of a child with TSC) set the tone for the conference that blended science with compassion.
A highlight was the keynote from Professor Petrus de Vries, who spoke about TAND (TSC-Associated Neuropsychiatric Disorders). His session looked at the emotional, behavioural and learning challenges that many people with TSC experience, and the importance of recognising and supporting them early.
Throughout the day, specialists covered the wide range of medical issues linked to TSC:
Paediatric and adult neurology – Prof. Colin Doherty gave updates on seizures, brain involvement and care across different ages.
Kidney health – Dr. Chris Kingswood explained what families and clinicians should watch for and how kidney complications can be managed.
Lung involvement (LAM) – Prof. Cormac McCarthy reviewed how TSC can affect the lungs and what monitoring is needed.
Genetics & counselling – Prof. Andrew Green broke down genetics and the role of genetic testing and what it means for families.
Blood Brain Barrier- Dr. Chris Greene spoke of groundbreaking collaborative research project on TSC and the blood brain barrier.
Multidisciplinary care -Dr. Damien Ferguson gave a behind-the-scenes look at the St. James’s Hospital TSC clinic development and team
There were also discussions on building a national TSC registry, encouraging collaboration between hospitals, and strengthening TSC care in Ireland.
The day wrapped up with a lively panel session where experts took questions and talked through the future of TSC services.
Day 2 - Patients & Families
Saturday shifted to a day designed specifically for patients, parents, siblings and carers. Many of the same experts returned — with more accessible, plain-language versions of their talks.
Professor de Vries explaining TAND in a way that was easy to follow and full of practical insights for families.
Other sessions covered:
Childhood development and neurological care
What to expect from adult neurology services
How multidisciplinary care works (with a behind-the-scenes look at the St. James’s Hospital TSC team)
Kidney, lung and genetic aspects of TSC — explained simply and clearly
The afternoon included another moving personal story from Judith Evers, reminding everyone of the day-to-day realities of living with TSC and why support networks matter.
Plenty of time was also set aside for questions, conversations and meeting others — something many families said was one of the most valuable parts of the day.
A generous and much appreciated grant of 500 euro towards catering was granted by Neuroscience Ireland https://neuroscienceireland.com/
Key Themes from the Two Days
Across both days, a few big ideas stood out:
TSC care needs teamwork and coordinated care — neurology, kidneys, lungs, genetics and mental health all matter.
TAND can affect everybody with TSC and is receiving growing attention — recognising behavioural, emotional and learning needs is essential.
Families want clear information and accessible pathways
Ireland is moving toward more joined-up national care, including hopes for a TSC registry and expanded specialist services.
Community is powerful — many attendees said it was reassuring simply to meet others who understand the journey.
