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Summer 2003 Table of Contents
Versión Español de este artículo (Spanish Version)

About The CHARGE Foundation

By Jennifer Holweger, Parent, Pflugerville, TX

My husband and I live in Pflugerville, Texas with our three year old son, Cameron Scott Holweger. Cameron was diagnosed with CHARGE Syndrome around his first birthday. Cameron is deafblind, has a heart defect, and cerebral palsy, along with other characteristics of CHARGE. Despite his disabilities and constant medical care, he is a very happy three-year-old. We are members of the CHARGE Syndrome Foundation located in Columbia, Missouri. The CHARGE Syndrome Foundation is a nonprofit charitable organization that provides information and referrals on CHARGE Syndrome to individuals, families, and professionals worldwide. Membership includes a quarterly newsletter, biennial conferences for families and professionals, parent-to-parent information, and publications.

CHARGE Syndrome refers to individuals born with a specific set of birth defects which include anomalies of the eyes, ears, face, heart, nasal passages, cranial nerves, lungs, gastrointestinal tract, genitals, urinary tract and kidneys. The acronym CHARGE stands for:

C = Coloboma and/or Cranial nerve abnormalities

H = Heart malformations

A = Atresia of the choanae

R = Retardation of growth and/or development

G = Genital and/or urinary abnormalities

E = Ear abnormalities/hearing loss

Due to hearing and vision anomalies, many of these individuals will be diagnosed as deafblind. Some individuals with CHARGE Syndrome will be unable to swallow, smell or taste. In addition to these anomalies, there can be other malformations seen in individuals having CHARGE Syndrome, including cleft lip and palate, trachea-esophageal fistula, poor muscle tone and/or poor immune response.

There is an overwhelming need to raise public awareness of CHARGE Syndrome in the medical, educational and general public, as this condition remains under-diagnosed. As a parent of a child with CHARGE, I strongly encourage those families with a CHARGE individual to become members of the foundation. They have been an excellent resource. They publish a management manual for parents, which is full of information. I'm still in the process of reading ours and have already learned a lot. A conference is held every two years with rotating geographic locations. We are fortunate to attend our first conference in July 2003 in Cleveland, Ohio. I've been told these conferences are a must to attend if you are a parent of a CHARGE child. I'm really looking forward to it! [Editor's note: Jennifer wrote this before heading off to the conference. Perhaps in a future edition she will let us know about her experiences there.]

I encourage you to become members of the foundation if you haven't already. Here's how to get in touch with them:

2004 Parkade Blvd.
Columbia, MO 65202-3121
800/442-7604 for families only
email: marion@chargesyndrome.org
http: //www.chargesyndrome.org

I wish you all the best of luck!

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Last Revision: August 19, 2003