CHARGE Syndrome Foundation, Inc.

The CHARGE Syndrome Foundation is sponsoring a study examining sleep apnea in individuals who have CHARGE syndrome. The principal investigator for this study is Dr. Kim Black.

Currently, there is very little information available concerning symptoms or treatment options of sleep apnea in the CHARGE Syndrome population. The principle investigator of this study, Dr. Kim Blake, is hoping to gather information in this area, as well as to determine the effects of tonsil and adenoid removal. Participants in this study will be asked to complete a short series of questionnaires regarding their child's sleep habits. The child must be between the ages of 0-14 with a confirmed clinical or genetic diagnosis of CHARGE Syndrome.

CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. 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 which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.

Continued research is needed to help them understand the medical and developmental challenges facing individuals with CHARGE. Better understanding will lead the way to interventions, therapies and educational strategies which can help people with CHARGE syndrome overcome many of the obstacles in their lives.

The mission of the CHARGE Syndrome Foundation is to provide support to individuals with CHARGE syndrome and their families; togather, develop, maintain and distribute information about CHARGE syndrome; and to promote awareness and research regarding its identification, cause and management.

CHARGE Syndrome Foundation, Inc. related entry . . .

National Center on Addiction and Substance Abuse (CASA)

The National Center on Addiction and Substance Abuse (CASA) at Columbia University is the only nation-wide organization that brings

Center for Online Addiction

Founded in 1995, the Center for Internet Addiction Recovery has been devoted to helping those who suffer from Internet addiction. The

The PROMIS Rehabilitation Clinic

With over 25 years of helping patients recover from the challenges of addiction and other co-occurring disorders, PROMIS provides an

Partnership for a Drug-Free America

The Partnership for a Drug-Free America is a nonprofit organization that unites parents, renowned scientists and communications

Blue Sky Bridge

Child abuse is a painful reality that affects the entire family, not just the abuse victim. By providing a centrally-located, child-focused

CARE Center

The CARE Center is a child advocacy center located in a quiet neighborhood in Oklahoma City. It is a place where children who have been

Child Advocacy Center (CAC)

Established in 1998, the Child Advocacy Center (CAC) provides help for children who are victims of serious physical and sexual abuse.