CHARGE syndrome is a recognizable genetic syndrome with known pattern of features. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. CHARGE syndrome is correlated with genetic mutation to CHD7 and the prevalence of CHARGE syndrome is 1:10,000-1:15,000 live births.
Babies with CHARGE syndrome are often born with life-threatening birth defects. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing 
loss, vision loss, and balance problems that delay their development and communication. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations. One of the hidden features of CHARGE syndrome is the determination and strong character these children display.
While extensive research has been conducted, there is still a lot to learn. Continued research is needed to help us understand the medical and developmental challenges facing individuals with CHARGE. This understanding leads the way to medical and educational interventions and therapies which help people with CHARGE syndrome overcome many of the obstacles in their lives.
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 children. Over the years, it has become clear that CHARGE is indeed a syndrome and at least one gene causing CHARGE syndrome has been discovered. The letters in CHARGE stand 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 we’re not changing the name.
ASL Sign for CHARGE Syndrome
Both hands are at the shoulders in the letter “C.” Hands move out and away forcefully, closing into the letter “S.”
Read More About The Story Behind the Sign
Prior to the 2007 conference, there was no sign for CHARGE syndrome. When people signed “CHARGE syndrome,” they fingerspelled it, which was cumbersome.
A discussion at a Board meeting led to the formation of a committee of six young adults with CHARGE syndrome to develop a sign for CHARGE syndrome. Working primarily via email, each committee member submitted three ideas. The eighteen possibilities were narrowed down to three. There was unanimous agreement on the sign pictured at right.
Both hands are at the shoulders in the letter “C.” Hands move out and away forcefully, closing into the letter “S.” The “C” for CHARGE at the shoulder was taken from the sign for “boss.” The sign for “strength” represents the “S” for syndrome.
Sign Development Committee
Board member Bonnie Haggerty facilitated the work of the committee. The six committee members are from Australia, Canada and the United States:
- Belinda Arnell, Australia
- Chip Dixon, United States
- Patty Haggerty, United States
- Ellen Howe, Australia
- Chantelle McLaren, Canada
- Christine Nieder, Canada
Sign Debuts at the 2007 Conference
At the Friday morning general session, before an international audience of more than six hundred, President Neal Stanger invited the three committee members in attendance to come forward and introduce the sign for CHARGE syndrome. Board member Pam Ryan described the process, development and significance of the sign. Belinda, Chip and Christine then gave the first public demonstration of the sign and taught it to the audience. The sign language interpreters incorporated it into their translations. It is now the international sign for CHARGE syndrome.
Belinda, Christine, Chip, and Pam introducing the sign at the 2007 conference.
