Jan-Paul Wagenaar is the chair of the Dutch TSC-patient advocacy group ‘Stichting Tubereuze Sclerosis Nederland’ (STSN). He joined the board of the STSN in 2005 and was responsible for fund raising and financial accountability. In 2013 he became chair of the STSN. He is the father of a son of 24 with TSC.

In 2026 the STSN will celebrate its 45th anniversary. After decades of successful activities and fruitful cooperation with the Dutch network of TSC-experts, being involved in various research initiatives, the STSN has to reset its priorities and targets. Making the STSN, an advocacy group of a rare disease run by volunteers only, ready for the future is a real challenge. Jan-Paul has witnessed great steps forward in the diagnosis and care of TSC and the growing awareness of the importance of behavioral aspects associated with TSC. But there are still many things to be improved. Finding ways to increase the perspective of parents and caretakers to deal with the 24/7 task to improve the living quality of people with TSC is the focus of the STSN for the years to come.

In his day to day life Jan-Paul works in agricultural research in the Netherlands and has many interactions with farming practice. Farming faces many challenges and changes, a perfect setting for cross-learning and working towards a variety of production systems ready for the future.