The Prader Willi Syndrome Association of Alberta was established in 1986 and is dedicated to helping the Prader Willi Syndrome community. The main priorities of the association are expressed in their mission statement.
“To connect with, inform and provide support to people affected by PWS in Alberta and to advance local research.”
The Willott Legacy Lives On
As the founders of the Prader Willi Association of Alberta (PWSAA), Margaret and Geoffrey Willott dedicated their lives to furthering education, providing family support, and promoting awareness of Prader Willi Syndrome. And now, after their passing, their legacy lives on with the generous gift of $5,000 they bequeathed to PWSAA.
The Willotts have a long history of PWS activism in Alberta. When their seventh child, Madeline, was born in 1960, experienced parents Margaret and Geoffrey knew something was wrong. As an infant, Madeline was floppy, weak, and unable to suck. Then in early toddlerhood, the insatiable appetite began. Without the benefit of a concrete diagnosis, the family did their best to manage the complexities of Madeline’s needs.
Already in her teens, and after many years of searching, Madeline finally received a diagnosis: Prader Willi Syndrome. Once they knew what they were dealing with, the Willotts never looked back. The couple sought out other families to create a parent association, and in 1986 the PWSAA was formed.
And Geoff and Margaret did so much more:
* They worked tirelessly to educate medical students, doctors, and other health professionals in southern Alberta and beyond.
* Geoff, a retired teacher, wrote several articles and pamphlets for the Prader Willi Association USA to help other parents better understand the syndrome and what they could do for their children with PWS.
* They worked with other founding members of PWSAA to organize the first major international PWS conference in Calgary. Held in 1989, families and doctors from Canada, the US, and even Europe attended.
* The couple helped organize and host weekend retreats for people with PWS and their families at William Watson Lodge in Peter Lougheed Provincial Park.
“As the parents of a child with Prader Willi, we are deeply indebted to the Willotts for their tireless efforts and meaningful contributions to the PWS community,” says Brooke Gibson, President, PWSAA. “We are deeply touched by their generous gift.”
Margaret & Geoff enjoyed the fun and fellowship of the PWS family retreats they hosted at William Watson Lodge.
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Prader Willi Syndrome Global Registry
Recently a PWS registry has been launched. The purpose of the registry is to develop a comprehensive database of individuals with PWS to better understand the full spectrum of PWS characteristics, to expedite the completion of clinical trials, and to determine areas of needed research and treatments to improve the lives of those affected by PWS. The infomation we can provide them is important, please consider registering today!
Case Western Reserve University,Genetic Counseling Training Program Study
If you are 18 years old or older, have a brother or sister with Prader-Willi Syndrome that is at least 5 years old, and have lived in the same home as your sibling with PWS for at least one year, your participation in this study would be greatly appreciated.
For more information Click here
The Prader-Willi Syndrome Association of Alberta is grateful for the following Donations:
DONATIONS IN MEMORY OF TREVOR $725
Encana Corporation $360
Phil and Julie Jarmin $100
Marion Fortier $50
IN MEMORY OF TREVOR $100
If you are experiencing financial hardship and would benefit from receiving some support to attend a PWS conference, event, webinar…, please contact our board with a proposal. Funds are limited and decisions are made by board members on a case-by-case, needs-based protocol.
(Forward to Brooke, firstname.lastname@example.org)