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*for families, professionals, and other interested persons in Canada  
  SPRING 2005; Vol.1; No.7
   IN THIS EDITION:
 
Welcome  

This edition brings a new look to our newsletter, and also some additional columns: your questions for a feeding therapist and a physiotherapist are answered!  As well, Dr. Kim Blake, one of the leading researchers on CHARGE Syndrome, is available to answer your questions in her regular edition of "Dear Dr. Kim".  We welcome all submissions to info@chargesyndrome.ca  Please click on the links to the left for the feature articles; the links below for the Province reports; and the links to the right for our columns.

In our feature story, President Cydne Park reports on the "Inclusive Education" conference held in Ottawa.  Much thanks goes to the Devon Lions Club and to the Canadian Association for Community Living for making it possible for her to attend!  

We also have news of a new study on communication out of the University of Tennessee which requires participants.  As well, information is up and coming on a study to be done in Canada on the CHARGE gene...with FREE testing! 

We bring you incredible news of success, with the feature on "The Second Child".  The next edition will also feature another story to give hope as well.

 

Province Reports:

(each section- click the links for more information)

  • President Cydne Park has incredible updates updates on fundraising!
  • Dr. Brian Lowry reports on the Congenital Anomololy Surveillance System in Alberta

ONTARIO

  • Fashion show features child with CHARGE syndrome
  • Request for Zehrs tapes for fundraising

  • Disabilities Awareness Week in NEW BRUNSWICK, MAY 29th-June 4th, 2005.  "Put our Abilities to Work for You". Visit www.gnb/0048/DAW
  • Currently in NB, there is an inclusive education review underway. Visit NEWS FROM THE EAST
  • Recently, Atlantic Provinces Special Education Authority held its Parent Workshop.  Deputy Ministers attended.  Visit NEWS FROM EAST

 

COLUMNS IN THIS EDITION:
 

dear dr. kim

 

I have a thirteen year old with CHARGE and I have been hearing about concerns with oesteoperosis (help another problem!) What should I do?

 

ask a feeding specialist

  I have a  5 year old that takes nothing by mouth and has some verbal skills. Oral motor stimulation is done by SLP and OT. Should we continue? Is there a critical window to move to oral feeding, tests to be done, etc.?

ask a physiotherapist

How can we improve on the muscle tone of my 5 year old child?


PRESIDENTS  REPORT:

It has been very busy over the past few months with CHARGE Syndrome Canada board meetings and Provincial representative meetings happening every two weeks alternatively.  We have established our priorities for this year, and already have many of them checked off the list!

The head office has been relocated in Devon Alberta, and our toll-free number is up and running.  Contact CSC at 1-866-987-4650 or by fax at (780) 987-5754.

If you missed the PRESIDENT'S MESSAGE for 2005, please let let us know so we can forward it to you!

Also check the website for up and coming news on the INTERNATIONAL CONFERENCE ON CHARGE SYNDROME, MIAMI JULY 2005. Hope we see you there!

 

CYDNE PARK,

President

 

*DON'T FORGET TO CHECK OUT OUR NEW LINKS IN THE CHARGE Syndrome Canada - Net Notables SECTION OF OUR WEBSITE!