CHARGE Syndrome Foundation

The journey of the CHARGE Syndrome Foundation began in 1982, in Columbia, Missouri, with the Deaf-Blind Project in the Division of Genetics, University of Missouri. A group of dedicated professionals got to work putting together valuable informational materials for families and parents who were dealing with the challenge of caring for their children with CHARGE syndrome. The journey of the CHARGE Syndrome Foundation began in 1982, in Columbia, Missouri, with the Deaf-Blind Project in the Division of Genetics, University of Missouri. A group of dedicated professionals got to work putting together valuable informational materials for families and parents who were dealing with the challenge of caring for their children with CHARGE syndrome.

Since those early days 34 years ago, the Foundation has grown significantly, spreading its impact across the US as well as over 25 countries. Its board and advisors are comprised of parents and professionals who volunteer their efforts pro bono towards the cause. This allows the Foundation to channel over 90% of funds raised towards directly benefiting individuals and families. The Foundation, including its biennial conference, is an indispensable resource for many of its members – a place to look for information, support, research and access to other parents and professionals.