PWS NATIONAL CONFERENCE 2025

Thank you to everyone who attended the 2025 PWS National Conference on Saturday, October 25, 2025 at The Kingbridge Centre in King City. FPWR Canada and OPWSA were thrilled to partner for this incredible event.

The conference was comprised of three distinct programs:
Family Conference for parents and guardians
Friends and Fun Club for individuals with PWS of all ages and their siblings
Professional Providers Day for agency staff, educators and other professionals that support individuals with PWS.

It was a great day of learning, information sharing, networking, peer support, and fun including wonderful programming for individuals with PWS of all ages and their siblings.

Family Conference

The conference featured presentations from experts in the field on such topics as behaviour, research and financial planning. The conference also provided ample time for parents and caregivers to connect.

Agenda

Presenter Bios

Research and Clinical Trials Update

This recording includes two presentations.

The Latest in PWS Research: Progress and Possibilities

Theresa Strong, Ph.D., Director of Research Programs, FPWR

Slides

Update from Aardvark Therapeutics and the Future of PWS Treatment

Karl Weddige, Ph.D., Senior Director - Field based Medical Affairs, Aardvark Therapeutics

Slides

Understanding and Supporting Behaviour in Prader-Willi Syndrome

Patrice Carroll, LICSW, Ph.D., Director of PWS Services, Latham Centers Inc.

Slides

Understanding the Sibling Experience with PWS

Moderator: Rob Pividor, OPWSA Co-Chair

Sibling Panelists: Kate MacKinnon, Catherine Rinaldi, Noah Cordeiro

Hear from siblings as they share their honest and heartfelt stories about growing up with a brother or sister with PWS. This session highlights the ups and downs of the sibling experience - the challenges, the joys, and the ways it has shaped who they are today.

Cathy Rulli, CPA, CGA, Specialist in Disability and Family Financial Planning

Navigating the financial side of caring for a child with Prader-Willi Syndrome can feel overwhelming. In this session, Cathy guided families through key financial resources, including acting as a representative with the CRA, the Disability Tax Credit (DTC), Canada Disability Benefit (CDB), Registered Disability Savings Plan (RDSP) and Henson Trust. To get in touch with Cathy, visit: www.rulicpa.com

Financial Planning & Strategies

Slides

The following presentations were not recorded

Jennifer Merkle, Vice Principal & Educational Consultant
Laura Merkle, Special Education Consultant

Understanding the School System

Slides

Walking the Journey Together: Navigating Adulthood

Kelly Casey, Developmental Services Consultant
Cathy Mallove, Chair, OPWSA Residential Options Family Support Network

Slides

Professional Providers Day

The conference featured an interactive session from Latham Centers which was designed to equip caregivers and support staff with practical, tramua-informed tools to manage and reduce challenging behaviours commonly seen in individuals with Prader-Willi Syndrome (PWS). Participants learned how to create structured, predictable environments, implement proactive behavioural strategies, and use self-compassion practices to reduce caregiver stress. Emphasis was placed on understanding the neurological basis of behaviours, such as rigidity and food=related anxiety, and how to respond with empathy, consistency, and skill. Attendees left the session with actionable techniques for fostering calmer, more collaborative daily routines while maintaining caregiver well-being.

Agenda

Presenter Bios