BCPWSA - British Columbia Prader Willi Syndrome Association
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If you or a family member is affected by PWS, we encourage you to become a member of our association.

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Recent news & events

FPWR Canada now Canada's National PWS Organization
(June 2, 2009)

The previous CPWSO board has unanimously approved the CPWSO joining FPWR Canada. This means that FPWR Canada is now Canada’s national PWS organization. The organizational 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.

Over the coming weeks look for an eNewsletter coming to all members. There will also be a Canadian and United States Press release this summer.

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 and members face through the provinces
    • Facilitate sharing of best practices between provincial groups (formal organizations or groups of families)
    • Bring information from FPWR Canada back to the provincial groups (formal organizations or groups of families)
  • 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)
    • Rhea Utley (Quebec)

National Conference Committee

  • Objectives:
    • To host Canada’s first official national PWS conference
    • To host an in-person working session with FPWR Canada Committee members from across the country
  • Chair – Pat Crne
  • Members
    • Danielle Livingston
    • 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
    • Pat Crne
    • Tanya Johnson

FPWR Canada Board

FPWR Canada 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 there are any members of the BCPWSA that would like to serve on a committee, please do not hesitate to get in touch with either Joanne Taylor or Keegan Johnson (www.fpwr.ca).