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About OPWSA

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, offers an annual camp for individuals with PWS, offers year-round support through our Executive Director, and works closely with the Foundation for Prader-Willi Research Canada, and a wide network of healthcare and residential facilities. OPWSA is primarily supported by donations and offers free membership to those who wish to join our community.

Our History

Over thirty years ago, 4 families in the southern Ontario area started meeting informally as a support and sharing group. Each had a family member with Prader Willi Syndrome. Little was known about the syndrome at that time, although they were all members of the US association, which sent quarterly update newsletters. This was a time before internet and so they 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. A hand-drawn logo was created, an application was sent in to the government, and the Ontario Prader-Willi Syndrome Association was formed.  

 

In the early years, they met informally, encouraged other PW families to join us, held an annual Christmas party and then, about 3 years in, they 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 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!

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