FPWR Canada now Canada's National PWS Organization
The previous CPWSO board has unanimously approved the CPWSO joining FPWR Canada. This means that FPWR Canada is now Canada’s national PWS organization. FPWR Canada's mission is to "Eliminate the challenges of Prader-Willi Syndrome through the advancement of research". The new national structure will have FPWR Canada focus on research at the national level and the provincial organizations focus on support. This is a big step forward as a united Canadian Group.
Committees
Four committees will be launched to start making a difference right away.
National Advisory Committee
- Objectives:
- Provide input to FPWR Canada related to the challenges people with PWS face
- Facilitate sharing of best practices between provincial groups
- Bring information from FPWR Canada back to the provincial groups
- Chair Joanne Taylor (BC)
- Members
- Doris Chura (Alberta)
- George McDonald (Manitoba)
- Gloria Woloshyn (Manitoba)
- Ana Snjaric (Ontario)
- Sarah Kelly (Ontario)
- Anne Marie (Quebec)
- Diane Rogers (PEI)
Growth Hormone Committee
- Objectives:
- To ensure all Canadians with PWS have access to growth hormone
- To ensure the costs of GH are covered across Canada
- To ensure all stakeholders (i.e., people with GH, parents of people with GH, medical professionals) have the most recent and up-to-date information regarding GH and PWS
- Chair Zdravko Crne
- Members
- Pat Parker
- Cheryl Gagne (BC)
- Patrick Bourbonnais
- Rhea Utley (Quebec)
National Conference Committee
- Objectives:
- To host Canada’s first official national PWS conference
- To host a working session with FPWR Canada Committee members from across the country
- Chair Pat Crne
- Members
- Danielle Livingston
- Gloria Woloshyn
- Tanya Johnson
National Calendar Committee
- Objectives:
- To publish Canada’s first National PWS calendar with representation from across the country
- To increase contact information for people with PWS from across the country
- Chair Susan James
- Members
FPWR Canada Board
The FPWR Canada board is comprised of parents of people with PWS as well as comunity professionals. The FPWR Canada board has a ‘fundraising’ board policy, which means that each board members commits to a target of raising $10,000. The current list of FPWR Canada board members are:
- Keegan Johnson President and Chairman
- Zdravko Crne - VP
- Manny Cordiero - Secretary
- Mike Henry - Treasurer
- Micheal Moldenhauer
- Andre Edelbrock
- Farah Ismail
- Tad Gacich
If you would like to serve on a committee or have any questions, please do not hesitate to get in touch with Keegan Johnson (keegan.johnson@fpwr.ca).
| 
