Family Meetings

Video presentations

Fred Nicolai is stepfather of Iris who is 34 years old and lives with PWS. Fred is father of Mart (32), Jos (28) and Karst (25). In 2013, he and his wife, Mirjam, started the Prader-Willi Huis (Home) in the countryside in the north of the Netherlands. It turned out to be the beginning of an adventure that resembled a roller coaster ride. Today they have nearly 40 caregivers and 32 PWS clients living and working in four locations. Since 2018 Fred is the chairperson of the Dutch Prader-Willi Foundation. His main motivation is: united cooperation to achieve appropriate care for all people – young and old – with PWS.

Janice Agarwal is a paediatric physical therapist specialist and parent of a person with PWS. She has almost 40 years of experience supporting families of babies and children with disabilities. Her work has grown from a national to an international level, giving her the opportunity to learn from disability support approaches around the world. With her husband, she founded Watch Us Farm, an inclusive agricultural community providing employment, learning and meaningful opportunities for people with disabilities.

Maria Benedekova is the mother of Tomáš, 24, who has PWS. In 2006, she was one of the founding members of the PWS Association in Slovakia, which is now led by Tomáš’s father, Pavel. As of 2026, the association supports around 23 member families. Maria works as a freelance German and English translator. The flexibility of her work allows her to adapt her schedule around Tomáš’s needs. Pavel works in social services and, from 2023 to 2025, worked as a social rehabilitation instructor at a day centre for adults with disabilities in Košice, where the family lives. Tomáš has attended the centre’s day programme since 2022. The family’s goal is to support him through the different stages of his life while also raising awareness and understanding of PWS among healthcare professionals, teachers and caregivers. One of the significant challenges facing families like theirs in Slovakia is the lack of supported living options for adults with PWS. The family hopes to help improve awareness, understanding and support for people with PWS and their families across Slovakia.