The Ontario Prader-Willi Syndrome Association is a non-profit charity founded by parents who wanted to support other families dealing with PWS. Since its founding, OPWSA has been a pioneer in supporting the PWS community in Ontario and beyond. OPWSA advocates for social and medical awareness of PWS, supports individuals and their families/caregivers, develops and distributes resource materials (including the internationally-recognized Red Yellow Green nutritional plan, and free fridge locks), hosts annual conferences and family gatherings, produces an annual camp for individuals with PWS, offers year-round counselling through our Executive Director, and works closely with the Foundation for Prader-Willi Research Canada, the Prader-Willi Syndrome clinic, and a wide network of healthcare and residential facilities. OPWSA is entirely supported by donations and offers free membership to those who wish to join our community.
Thirty years ago, 4 families in the southern Ontario area started meeting informally as a support and sharing group. We each had a family member with Prader Willi Syndrome. Little was known about the syndrome at that time, although we were all members of the US association, which sent us quarterly update newsletters. This was a time before internet and so we found in each other the support that each family was seeking.
The Marks, the Slaters, the MacKinnons and the Beddoes decided to create a charitable, not for profit Ontario Association. Our logo was hand drawn, our application was sent in to the government and the Ontario Prader Willi Syndrome Association was formed.
In the early years, we met informally, encouraged other PW families to join us, held an annual Christmas party and then, about 3 years in, we held our first family conference.
Those were early days, with many growing pains and frustrations. Knowledge about the syndrome was scarce and knowledgable doctors even more so. Thanks to the founding members and the many interested, hard working families and supporters who have joined us since, the OPWSA has grown to be the wonderful organization it is today, complete with supportive doctors, caregivers and families. We have come a long way!