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The Foundation

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The mission of the CHARGE Syndrome Foundation:

We lead and partner to improve the lives of people with CHARGE syndrome locally, nationally and internationally through outreach, education, and research.

  • Engage in knowledge acquisition, development and dissemination
  • Promote innovative scientific and clinical advancements
  • Champion the lifelong potential of people with CHARGE syndrome

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 up to 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 11th International Conference in Scottsdale, Arizona (July 25-28, 2013), there were 925 family members (more than 180 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 Office

CHARGE Syndrome Foundation, Inc.
318 Half Day Rd #305
Buffalo Grove, IL 60089
Phone: (516) 684-4720                                       Toll Free: (800) 442-7604
Fax: (516) 883-9060

Director of Outreach

Sheri Stanger

Toll Free: 1-855-5CHARGE (1-855-524-2743)
Phone: 914-479-0079
Fax: 914-478-1204

Email Sheri

Scientific Advisory Board

Chairperson:

Donna Martin, MD, PhD

Brian Brooks, MD, PhD

Daniel Marenda, PhD

Peter Scacheri, PhD

Seema Lalani, MD

Conny M.A. van Ravenswaaij-Arts, MD, PhD

Learn more about the Scientific Advisory Board

Committees

Fundraising Committee
Chairperson: David Wolfe

Learn more about this committee

Research Committee
Chairpersons: Meg Hefner
Learn more about this committee

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

Communications Committee
Chairperson: Lisa Weir
Learn more about this committee

Special Advisors

Ted Bililies

Massachusetts

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

David Wolfe  

President                                                   Illinois                                                                  Email David

Lisa Weir
Vice President
New Brunswick, Canada
Email Lisa

Brownie Shott

Treasurer

Texas
Email Brownie

Neal Stanger
Secretary
New York
Email Neal

Eric Bluestone

New York

Email Eric

Joanne Lent

New Jersey

Email Joanne

Amrit Mehta
Michigan

Email Amrit

Pamela Ryan
Massachusetts
Email Pam

Lori Swanson
Wisconsin
Email Lori

 

 

Past Presidents

Neal Stanger, 2005-2011
New York

Bruce Appell, 1999-2005
Maryland

Donna Lacey, 1997-1999
Pennsylvania

Steve Sorkin, 1993-1997
Missouri