NATIONAL ORGANIZATION FOR DISORDERS OF THE CORPUS CALLOSUM

Although still considered rare, callsoal disorders are some of the most common brain malformations. Researchers estimate that DCC occurs in 1 in 3,000 live births in the United States. Since DCC is only diagnosed through neuroimaging (MRI, CT Scan, Sonogram), the numbers may be significantly higher. Misdiagnosis commonly leads families in painful pursuit of therapies and treatments that are inappropriate and most often a failure.

Even when DCC is accurately diagnosed, health professionals are seldom aware of the support and therapeutic options available to families. NODCC regularly hears from families who were told their child would never walk or talk and were handed a book medical text book for a description of the disorder. These families are left on their own to find support and a plan of action in dealing with their loved ones. Because of this lack of awareness, many individuals and families “fall through the cracks” and are denied services and interventions that could make all the difference – educationally, professionally, financially, emotionally.

This kind of experience led a stay-at-home mother in Orange County, California to organize a network to support those affected by a DCC, improve diagnosis and treatment options and raise awareness about this disorder. She joined with neuroscientists, pediatricians, teachers, researchers and other parents/relatives of children with a DCC to found the NODCC in 2002.

Today, the NODCC remains the only national organization committed to this underserved population.