CHARGE Syndrome Foundation, Inc.

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CHARGE Syndrome Foundation, Inc.
141 Middle Neck Rd.
Sands Point, NY 11050
United States
(516) 684-4720
(516) 883-9060
Email contact form

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.

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