Spring 2004 Table of Contents
Versión Español de este artículo (Spanish Version)

About the CHARGE Foundation and Conference

By Jennifer Holweger, Parent, Pflugerville, TX

Abstract: This article gives a summary of the CHARGE Syndrome Conference held in Cleveland, Ohio this past summer.

Key Words: blind, deafblind, family, CHARGE Syndrome, conference

As I promised in the Summer 2003 issue, here is my follow-up story after attending the CHARGE Conference in Cleveland, Ohio. I’m so glad we were able to attend and now I really encourage those parents who have a CHARGER to join the CHARGE Syndrome Foundation. I learned a lot of new information and was able to share my story and experiences with other families as well as hearing their stories.

There was a CHARGE 101 Seminar which covered everything from the characteristics and diagnostic criteria, to the medical management issues and physical influences on development. It was very informative about CHARGE in

general. We also attended a seminar on finding the genetic cause of CHARGE. Researchers believe that CHARGE is caused by a deletion and/or mutation of a single gene. Shayne, Cameron and I donated blood to a study that is being conducted by the Baylor College of Medicine in Houston. They are predicting the results will be available in about five years.

Other seminars were: Toileting and Sleep Issues; Independent Living Skills; Endocrinology; Puberty in Adolescents; School Issues for Parents and Teachers; Transitioning; Adaptive Physical Education; Increasing the Effectiveness of Communication and Language; Interveners; A Sensory Motor Approach to Feeding; Cochlear Implantation; Audiology; The Determinates of Communication Ability; and Behavior Symposiums. I have handouts and/or notes on the above seminars. If anyone is interested in something, feel free to contact me at: jenniferholweger@sbcglobal.net. I would be glad to pass on the information. Your best resource is going to be the CHARGE Syndrome Foundation, which I encourage you to join if you haven’t already. Here is the contact information:

CHARGE Syndrome Foundation, Inc.
2004 Parkade Blvd., Columbia, MO 65202-3121
800-442-7604 (for families only)
email: marion@chargesyndrome.org
http://www.chargesyndrome.org

Good luck from our family to yours! The next CHARGE Conference is in 2005 and we are planning on meeting in Miami, FL. Hope to see you there!

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Last Revision: August 23, 2004