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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 carried out by the administrative assistant in the 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 9th International Conference in Bloomingdale, IL, (July 24-26, 2009), there were more than 750 family members (more than 100 with CHARGE) and professionals who met with each other to learn more about CHARGE and how to treat their child/patient’s problems.  In addition to the conferences, 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.

Board of Directors 2009 - 2013

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

Bottom row L-R: Lori Swanson, Diane Haynes, Meg Hefner (Special Advisor)

Middle Row L-R: Marilyn Ogan, Cynthia Antaya, Pam Ryan

Back Row L-R: Lori Bookstaver (Administrative Assistant), Lisa Weir (Vice-President), Matt Murray, John Wynne, David Wolfe (Treasurer), Neal Stanger (President), Brownie Shott (Secretary)

Absent from Photo: Kathy McNulty (Special Advisor)

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)

Committees

Conference Committee
Chairperson: Janet Murray
Learn more about this committee

Fundraising Committee
Chairperson: David Wolfe                                      Learn more about this committee

Research Committee
Chairpersons: Meg Hefner
Learn more about this committee

Member Services Committee
Chairperson: Pamela Ryan
Learn more about this committee

Education Committee
Chairperson: Lori Swanson & Kathy McNulty
Learn more about this committee

Communications Committee
Chairperson: Lisa Weir
Learn more about this committee

Special Advisors

Meg Hefner, M.S. Genetic Counselor
Missouri
Email Meg

Kathy McNulty, Associate Project Director,
National Consortium on Deaf-Blindness

New York
Email Kathy

Susan Wolfe

Illinois

Email Susan

Board of Directors

Neal Stanger
President
New York
Email Neal

Lisa Weir
Vice President
New Brunswick, Canada
Email Lisa

David Wolfe  

Treasurer                                                    Illinois                                                                  Email David

Brownie Shott

Secretary

Texas
Email Brownie

Marilyn Ogan
Indiana
Email Marilyn

Matthew Murray
Massachusetts
Email Matt

Pamela Ryan
Massachusetts
Email Pam

Lori Swanson
Wisconsin
Email Lori

John Wynne
Ohio
Email John

Diane Haynes

Kentucky

Email Diane

Cynthia Antaya

Virginia

Email Cynthia

 

Past Presidents

Bruce Appell, 1999-2005
Maryland

Donna Lacey, 1997-1999
Pennsylvania

Steve Sorkin, 1993-1997
Missouri