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How To Give

Make a tax-deductible contribution to the CHARGE Syndrome Foundation using PayPal or a major credit card.

Note that you do not need a Paypal account to make a donation.

If you prefer to mail your contribution, use this form.

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.

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)

141 Middle Neck Rd · Sands Point, NY 11050 · 800-442-7604 · info@chargesyndrome.org
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