The National Organization for Disorders of the Corpus Callosum (NODCC) is a 501(c)(3) nonprofit established in 2003 for individuals with disorders of the corpus callosum, their families and professionals.

The NODCC has become the leading organization for disorders of the corpus callosum seeking to raise the profile, understanding and acceptance of these disorders through education, networking, advocacy, and being a catalyst for research.

NODCC Founding Story

Barbara Fonseca began seeking answers in 1999 as to why her 8-month-old son, Nathan, was not meeting developmental milestones. Believing something was wrong, despite being told otherwise by Nathan’s doctor, she sought a pediatric eye specialist. Only after performing an MRI was it discovered that Nathan had a rare birth defect named hypoplasia, one of several disorders of the corpus callosum (DCC). However, the specialist did not have much information regarding the diagnosis.

Desperate for more information, Barbara turned to the Internet. Here, she encountered a listserv community sponsored by the University of Maine where parents of children with a DCC were sharing their life stories and support. She learned about a family gathering in Ohio and attended in the summer of 2000. At the gathering, Barbara met parents of children with various types of callosal disorders. Although she found a supportive and understanding community, Barbara was left with many unanswered questions.

Searching for answers, Barbara sought out scientists studying the disorder and hosted the first 3-day conference in Yorba Linda, CA, 2001 with the help of family and friends. The conference directly addressed the issues of living with a disorder of the corpus callosum and the need for more research and studies. With input and participation by families and scientific professionals, the National Organization for Disorders of the Corpus Callosum (NODCC) was formed as a 501(c)3 nonprofit in 2003.

Today, the NODCC is the leading nonprofit focused on improving and supporting the lives of individuals with disorders of the corpus callosum.