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How Far We’ve Come

On May 5, 2023, the CHARGE Syndrome Foundation celebrated its 30th anniversary. As we look back over the past three decades, we reflect on not just how far we as a Foundation have come, but how far the knowledge of CHARGE as a syndrome has advanced.

History of the name “CHARGE”

The name “CHARGE” was a clever way (in 1981) to refer to a newly recognized cluster of features seen in a number of individuals. Over the years, it has become clear that CHARGE is indeed a syndrome and at least one gene mutation causing CHARGE syndrome has been identified. The letters in CHARGE stood for: Coloboma of the eye, Heart defects, Atresia of the choanae, restriction of growth and development, and Ear abnormalities and deafness. Those features are no longer used in making a diagnosis of CHARGE syndrome, but the name has remained.

The Beginning of the Foundation

The building blocks for the Foundation were first laid in 1982 with a Deaf-Blind Project in the Division of Genetics, Department of Child Health, University of Missouri, Columbia. The primary participants in the Deaf-Blind Project were Dr. Joyce Mitchell (Medical Informatics), Dr. Sandra Davenport (Genetics and Developmental Pediatrics), Dr. James Thelin (Audiology), and Meg Hefner (Genetic Counseling). Their tireless and pioneering work subsequently led to the formation of the CHARGE Syndrome Foundation.

Looking Ahead

During the three decades since, the Foundation has grown and now serves over 3,600 families and individuals with CHARGE syndrome annually. We continue to learn more about CHARGE syndrome every year and work closely with researchers and professionals, supporting their research and sharing their knowledge with our community through webinars and our biennial Conferences.