CHARGE Syndrome Canada

December 2005 Update

Cydne Park, President and Alberta REP

As your Alberta Representative I am pleased to say that with the help of friends and family that volunteered their time, Alberta has raised $8,000 for CHARGE.  This was accomplished through raffle sales; barbeques held at the local food market; soliciting donations by making presentations to service clubs, government agencies, and corporations.  I also travelled to Calgary with other CHARGE Syndrome volunteers to assist the Canadian Organization for Rare Disorders (CORD) with the casino, which brought $1000 for CHARGE. I have also submitted several proposals to government and non-government agencies. 

CHARGE Syndrome Canada was able to gain newspaper coverage locally during the "October draw for prizes" which helped gain awareness of this syndrome.  As well, I sold many CHARGE ball caps and logo t-shirts which will continue to raise awareness in the community as these items are worn!  By the ardourous solicitation of prize donations, many business leaders have become aware of CHARGE syndrome in the Alberta community. 

I have been in contact with a number of Alberta orgainzations that represent individuals who are deafblind.  They are very interested in working with CHARGE Syndrome Canada both in the Province of Alberta, and as well on a National level. As we network ideas, and with more information presented, I will be looking forward to following up with these contacts.

I had the pleasure of being a delegate for the 7th International Conference on CHARGE Syndrome held in Miami, July 2005, with thanks to the board of directors.  It was both an honour and a privilege to represent CHARGE Syndrome Canada at this event.  It was also an excellent opportunity to network with numerous individuals with CHARGE syndrome, professionals with an interest in CHARGE, and to meet representatives from other CHARGE Syndrome organizations from around the world. 

In addition, it was decided by the board to host the 3rd Annual General Meeting for CHARGE Syndrome Canada during the International conference in Miami.  Please visit "How We Are Meeting Our Mission" in the 2004-05 fiscal year.  The minutes from the AGM will be presented next year at our 4th AGM sometime in the Spring.

Cydne Park, Alberta Representative

CHARGE Syndrome Canada Newsletter Christmas 2005 <back to newsletter>