CHARGE Syndrome Foundation

The Foundation

Boy playing with blocks

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 the majority of the Board must be comprised of individuals who have a family member with CHARGE syndrome. Special advisors to the Board provide assistance in program development. The day to day management of the Foundation is carried out by the officers.

A major activity of the Foundation Office is to provide information and support to thousands of families and professionals, especially to families with a newly identified son or daughter 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 10th International Conference in Orlando, FL, (July 28-31, 2011), there were 850 family members (more than 100 with CHARGE) and professionals who met with each other to learn more about CHARGE and how to treat their son or daughter/patient’s issues. In addition to the conferences, the Foundation is involved in the development of programs for public awareness, services for special groups, and fundraising. The Foundation also employs a Director of Outreach, whose primary role is to maintain connections and facilitate communication between the Foundation and families as well as other organizations in related fields.

Become a member today — visit our membership page.

Foundation Board, Special Advisors and Director of Outreach 2011

Front Row, L-R: Neal Stanger (Secretary), Lisa Weir (Vice-President), David Wolfe (President), Brownie Shott (Treasurer)

Back Row, L-R: Kathy McNulty (Special Advisor), Leslie Kauffman (Director), Marilyn Ogan (Director), Sheri Stanger (Director of Outreach), Amrit Mehta (Director), Meg Hefner (Special Advisory), Susan Wolfe (Special Advisor), Lori Swanson (Director), Melva Strang-Foster (Director)

Missing from photo: Pamela Ryan

Foundation Office

CHARGE Syndrome Foundation, Inc.
141 Middle Neck Rd.
Sands Point, NY 11050
Phone: (516) 684-4720 Toll Free: (800) 442-7604
Fax: (516) 883-9060
Email: Lori (Lori Bookstaver, Administrative Assistant)