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2009 CHARGE Conference:

Join us for the 2009 conference at the Indian Lakes Resort in Chicago, Illinois.

Get info about our past conferences.

CHARGE Syndrome Foundation Video

View a video about the foundation.

The Foundation

The CHARGE Syndrome Foundation, Inc. is a non profit, charitable organization that was established in 1993 by professionals who had worked with individuals with CHARGE syndrome and by parents of children with CHARGE syndrome.  The Foundation is governed by a Board composed of 12 members.  The Board is unique because at least 7 members must be individuals with CHARGE syndrome or their family members.  Special advisors to the Board provide assistance in program development.  The daily business of the Foundation is conducted by both the Executive Director in Columbia, MO. and the Adminstrative Director in the new foundation office in Sands Point, NY 

A major activity of the Foundation Office is to provide information and support to more than 400 members composed of both families and professionals – and especially to families with a newly identified child with CHARGE syndrome.  The Foundation makes its publications – including a newsletter and a manual for families – and resources available to families and the professionals who serve these families.  The Foundation maintains contacts with professionals from around the world and supports research on CHARGE.  The major activity of the Foundation is its biennial conference for families and professionals.  At the 8th International Conference in Costa Mesa, CA (July 27-29, 2007), there were more than 625 family members (~100 with CHARGE) who met with professionals and with each other to learn more about CHARGE and how to treat their child’s problems.  In addition to these, the Foundation is involved in the development of programs for public awareness, services for special groups, and fundraising.

Become a member today — print and fill-out our membership form.


Current Board of Directors, Special Advisors and Employees for the Foundation:

Bottom row L-R: John Wynne (Treasurer), Lisa Weir (Secretary), Matt Murray, Marion Norbury (Executive Director), Marilyn Ogan, Jim Thelin (Vice President), Neal Stanger (President).

Middle Row L-R: Lacey Friedman, Meg Hefner (Special Advisor), Pam Ryan

Back Row L-R: Lori Swanson, Kathy McNulty (Special Advisor), Lori Bookstaver (Administrative Assistant), Brownie Shott.