CHARGE Syndrome Canada - 2004

These are some of the things that kept us busy:

Requests for information

• answered numerous requests for information from the info@chargesyndrome.ca and 1-800 line
• provided information and resources on request on Vitalstim feeding technique
• Placed an information table in Alberta

Networking

• Networking with genetic doctor in France who is writing a book chapter
• Newfoundland - Memorial University study of genetic conditions which affect vision
• informal network meetings in Ontario for young adults with CHARGE
• Montreal - plans for next potential workshop

Assisting Individuals with CHARGE

• providing information so individual could receive funding
• support for attending appointments
• networked with government organizations to provide information for young adults with CHARGE

CHARGE Awareness

• pamphlets to government and non-government agencies, hospitals and health centers, disability related organizations; community business related to health care; college programs upon request; and to individuals
• "deafblind awareness month - JUNE press release
• CHARGE Syndrome Canada logo products sold
• published in INTERVENTION magazine, a publication of CDBRA National
• published CHARGE Syndrome Canada e-newsletter
• continued to add to our contact and membership list
• maintain and update our website www.chargesyndrome.ca
• provided information (by e-list service, newsletter links) on details and contacts for several CHARGE Syndrome studies
• Publication of  CHARGE Syndrome Canada's first booklet, "Introducing CHARGE Syndrome"
• hosted a workshop in October 2004 at the Hospital for Sick Children in Toronto, partnered with the Canadian deafblind and Rubella Association, NB/PEI Chapter; The Hospital for Sick Children Foundation, and The Hospital for Sick Children Health, Information and Promotion Center
• held a draw for prizes in several locations

NOW IN 2005 WE ARE A REGISTERED CHARITABLE ORGANIZATION!!

~go back~