CHARGE Syndrome Canada's third year!
CHARGE Syndrome Canada has met its mission in the third year by:
INCREASED PUBLIC AWARENESS OF CHARGE SYNDROME BY:
WEBSITE - maintaining updated website at http://www.chargesyndrome.ca , which now includes sections on education and research development
PRESS RELEASES - distributing press releases to newspaper's across the nation proclaiming the month of june as Deafblind Awareness month and July as CHARGE Syndrome Awareness month
INFORMATION TABLES - hosting tables at various venues such as: "The Canadian Association for Community Living INclusdive Education Conference" in Ottawa; The Canadian Vision Itinerant Teacher's Conference in Halifax; The "Sharing Visions" conference at W. Ross Macdonald School in Brantford
WORKSHOP - Hosting the CHARGE syndrome workshop "Parents as Partners" at the Toronto Hospital for Sick Children in October 2004, sponsored by CHARGE Syndrome Canada; The Candian Deafblind and Rubella Association New Brunswick/PEI Chapter; The Hosptial for Sick Children Foundation; and the Hosptial for Sick Children Health Information and Promotion Center. Special guest speakers included Meg Hefner, genetic councellor from St. Louis, and Dr. KD Blake, Professor of Pediatrics, Dalhousie University. There were 52 parents, professsionals or individuals with CHARGE Syndrome who attended.
PAMPHLET - the CHARGE Syndrome Canada information pamphlet was updated at now available online
BOOKLETS - "Introducing CHARGE Syndrome"; "Parents as Partners in Education" and "The CHARGE Syndrome Care Report", are available to members who request them.
POWERPOINT CD - "Parents as Partners in Education - Transition Managment"
ACTED AS A RESOURCE FOR INDIVIDUALS WITH CHARGE SYNDROME, THEIR FAMILIES AND RELATED PROFESSIONALS BY:
NEWSLETTER - Including news features
REQUESTING ARTICLES OR PRESENTATION SUBMISSIONS - contacts and members were asked to submit articles which could demonstrate the need for specific approaches and techniques
1-800 TOLL FREE LINE - crisis intervention by giving suggestions of specific approaches and/or techniques
WORKED WITH BOTH GOVERNMENT AND NON-GOVERNMENT AGENCIES AND ORGANIZATIONS TO FOSTER NETWORKING, PARTNERSHIPS, AND INFORMATION EXCHANGE THROUGH:
DALHOUSIE UNIVERSITY AND IWK CHILDREN'S HOSPITAL - Associate Professor of Medicine, Dr. KD Blake has been a tremendous resource for answering questions which come up on our info@charge request line, as well as presenting at workshops
HOSPITAL FOR SICK CHILDREN'S FOUNDATION AND THE HOSPITAL FOR SICK CHILDREN'S HEALTH, EDUCATION, AND PROMOTION CENTER - helped provide funding for the "Parents as Partners" workshop held in Toronto in October 2004
CANADIAN DEAFBLIND AND RUBELLA ASSOCIATION NB/PEI CHAPTER - co-hosted the "Parents as Partners" workshop in Toronto as well as provided a financial gift for CHARGE Syndrome Canada
E.C. DRURY SCHOOL FOR THE DEAF IN ONTARIO; W. ROSS MACDONALD RESOURCE SERVICES IN ONTARIO - provided information pamphlets
CANADIAN DEAFBLIND AND RUBELLA ASSOCIATION NATIONAL (CDBRA) - published in INTERVENTION Magazine
CANADIAN NATIONAL SOCIETY OF THE DEAFBIND (CNSDB) - published in their newsletter
ALBERTA ASSOCIATION FOR COMMUNITY LIVING - helped provide funding for information tables and workshop attendance
CANADIAN ASSOCIATION FOR COMMUNITY LIVING
SASKATCHEWAN ASSOCIATION FOR COMMUNITY LIVING
ALBERTA COMMITEE FOR CITIZENS WITH DISABILITIES
EDMONTON EDUCATIONAL CONSULTING SERVICES
CNIB - NORTHERN ALBERTA DIVISION
ALBERTA SOCIETY FOR THE VISUALLY IMPAIRED
GRANT MACEWAN COLLEGE - EDMONTON
UNIVERSITY OF ALBERTA HOSPITAL; STOLLERY CHILDREN'S HOSPITAL; ROYAL ALEXANDRA HOSPITAL
COMPRU CENTRE IN EDMONTON
ALBERTA HEALTH AND WELLNESS
"ALBERTA EDUCATION"
ALBERTA FAMILY SUPPORTS FOR CHILDREN WITH DISABILITIES
LIONS CLUBS OF DEVON, BEAUMONT, EDMONTON, SHERWOOD PARK, CALGARY, AND CENTRAL ALBERTA
CAPITAL HEALTH AUTHORITY
DEVON COMMUNITY HEALTH COUNCIL
CANADIAN DEAFBLIND AND RUBELLA ASSOCIATION, (CDBRA), ALBERTA CHAPTER
ALBERTA FAMILY & COMMUNITY SUPPORT SERVICES
EXCEPTIONAL FAMILIES' RESOURCE NETWORK (EFRN)
CANADIAN ORGANIZATION FOR RARE DISORDERS (CORD)
SUPPORTED RELATED RESEARCH BY:
PROVIDING - information on the need for participants in several studies through our newsletter and e-link, inlcuding the University of Tennessee study on Communication, headed up by Jim Thelin; and a few studies out of Dalhousie University