Family Meetings

Children with PWS face different challenges at different stages of their school life, and families often have questions about when to start school, which type of school is best, and how to ensure their child is properly supported.

This meeting will look at schooling across the school years, recognising that children with PWS vary widely in their abilities and that school systems and family circumstances differ around the world. We will hear from expert speakers with long experience in PWS education and research, as well as parents sharing real‑world examples from their own children’s school experiences.

The session will cover practical issues such as preparing schools with clear, written information about PWS as a lifelong condition, managing food security in school, setting realistic expectations, and responding to social and behavioural challenges that can emerge as children get older.

There will be time for questions, discussion, and learning from each other, giving participants the opportunity to share experiences and practical ideas across countries and settings.

You’re not alone. Join us to learn, ask questions, and find community.

The meeting is directed at parents and families, but anyone with an interest in PWS is welcome.

Our speakers

Barbara J. (BJ) Goff, Ed.D. and Elizabeth Roof, M.A., bring together decades of complementary experience in education and research to address planning for students with Prader–Willi syndrome across the school years. BJ Goff is Professor Emeritus of Special Education at Westfield State University with over 35 years’ experience supporting individuals with PWS in educational settings and serves as Educational Adviser to IPWSO. Elizabeth Roof is a Senior Research Specialist at Vanderbilt University and has led more than 30 years of longitudinal research with children, adolescents, and adults with PWS, alongside extensive consultation with families and schools. Together, they combine practical classroom expertise with research‑driven insight to support successful educational outcomes for students with PWS.

Michael Rubin and Cathy Mallove are Toronto (Canada)‑based parents of daughters with PWS who bring personal and practical insight into navigating school systems. Michael, a clergy member and educator, lived in Israel for 17 years before settling in Toronto with his partner, Iris, and their daughter, Elah, who was diagnosed at four and a half; his background in education and inclusion work shaped how he supported her learning. Cathy is a strategic communication and change‑management professional with over 25 years’ experience across sectors and has been an active leader within the Ontario (Canada) PWS Association. She is also a member of IPWSO’s Famcare Board. Her advocacy began with helping Rebecca move through elementary and secondary school, and then post-school transition to adult living. Together, Michael and Cathy share distinct perspectives, lessons, and insights from supporting their daughters’ very different educational paths.

Salman Shaban is a third‑generation family business leader in the metal recycling and aluminium manufacturing industry, currently based in Doha, Qatar, where he serves as Director at Lucky Group, overseeing strategy and international sales with a strong focus on sustainability and ESG standards. With over 20 years of global experience, he has led major capital projects and sustainability initiatives across diverse markets. Beyond his professional work, Salman is a committed advocate for inclusion, inspired by his daughter Soha’s diagnosis with PWS shortly after her birth in 2011. He works closely with schools, healthcare institutions, and advisory boards to raise awareness, improve accommodations, and support families, bringing a global perspective and deeply personal motivation to his work.