Where We Started
In 1986, the PWSA of Alberta was founded by Margaret and Geoffrey Willott. After many years of searching, they finally received a diagnosis for their daughter Madeline. They then sought out other families to create a parent association. Margaret and Geoff worked tirelessly to educate medical students, and other health professionals about PWS, and how to cope with it. At that time there was little accessible information available for parents, and only a few professionals knew about it. They both wrote articles and pamphlets to help other parents understand the syndrome. Geoffrey also co-authored the manual “Prader- Willi Syndrome: Residential Options in Western Canada” with Terrance James. In 1989 they worked with other founding members to organize the first major international PWS conference outside the USA, and it was held in Calgary. The Legacy of the Willotts and founding members lives on with our current association.
Over the years, family weekends were held at William Watson’s Lodge, in the Peter Lougheed provincial park as well as walk-a-thons, family picnics and social gatherings in different locations. The association has collaborated and learned from geneticist Dr. Rachel Wevrick, educational researcher, Dr. Shelley Kinash and paediatric endocrinologist and researcher Andrea Haqq.
Our Organization Today
We are still made up of mainly parents, relatives and support workers of individuals with PWS. Our business is conducted over three board meetings and an AGM each year.
Our AGM provides us with an opportunity to reconnect with interested parents and caregivers. The chance to interface with others regarding best care practices and share both success and failure stories. Our PWS children enjoy meeting up with each other, sharing a light snack and some kind of physical activity. Join us at our AGM and meet some great people.
Many hands make light the load and many minds can smooth the road.