Disorders of the Corpus Callosum (DCC) are not widely known or recognized by many, leaving diagnosed individuals and their families without access to extensive medical information and emotional support. In the late 90’s, it was thought that 1 in 10,000 individuals were affected by a disorder of the callosum. Current research suggests that as many as 1 person in 2,053 is affected by some disorder of the corpus callosum.
Because a firm diagnosis of callosal disorders has only been possible since the invention of the MRI, this range of conditions is only beginning to be understood. Prior to the formation of the National Organization for Disorders of the Corpus Callosum (NODCC) in 2002, there was not a formal place for the families to turn to for information and support. There were no large studies on the diagnosis of DCC being done and very little was known in how to best live with the conditions.
The Early Days of Support: Before the NODCC
The ACC Network, affiliated within the University of Maine’s College of Education and Human Development was founded in 1989 and operated by Gary and Kathryn Schilmoeller (both Developmental and Experimental Psychologists), whose son was living with agenesis of the corpus callosum. The ACC Network had a networking directory, published a printed newsletter, and sponsored an online discussion board focused on disorders of the corpus callosum and related issues.
Family gatherings were hosted by families participating in the ACC Network from 1999-2002. At the 2000 summer gathering in Ohio, one of the attendees was Kim Peek, a “megasavant” who was born with macrocephaly, damage to the cerebellum and agenesis of the corpus callosum. Doctors had speculated Kim’s neurons made unusual connections due to the absence of a corpus callosum, which resulted in an incredible memory capacity. Kim was the inspiration for the character of Raymond Babbitt (actor Dustin Hoffman) in the movie, Rainman.
In 2001, Barbara Fonseca and family hosted the Agenesis of Corpus Callosum Family Conference in Yorba Linda, California where 40-50 families were present and adamant in learning more information on corpus callosum disorders. The Fonseca’s family and friends cooked and served a spaghetti dinner to enthusiastic attendees searching for answers for their loved ones.
At the next family gathering in Minnesota in 2002, a group of inspired individuals (Barbara & Anthony Fonseca, Kathy & Gary Schilmoeller, Paul Moes, James Jewell, Warren Brown, Donna Rosenbery, Donna Doherty, and Lynn Paul) began creating a nonprofit organization to encourage, educate, and support families with diagnoses of corpus callosum disorders or expertise in research. The mission statement, articles of incorporation and Bylaws for the National Organization for Disorders of the Corpus Callosum were developed by this group with professional guidance.
NODCC: A New Nonprofit
In October of 2002, the NODCC received its advance ruling from the IRS to begin operating as a public organization. The following year in August of 2003, the NODCC was incorporated as a 501(c)(3) charitable organization. The organization has continued to reach out to families worldwide, offering support and education to families, raising awareness of the various disorders, and how to best enhance the lives of those affected by DCC.
Since the formation of the NODCC, increased access to brain imaging and better estimation of DCC diagnosis have been established. In 2003, the American Academy of Neurology began recommending a MRI evaluation for children with developmental delay in two or more areas. Currently, this recommendation is more widely known by neurologists and pediatricians and is being followed much more often than it was 10 years ago. As a result, disorders of corpus callosum and other structural brain abnormalities are being identified in many more children.
As of October 2015, there is a specific diagnosis code for disorders of the corpus callosum. This provides a more accurate estimate of the number of diagnosed individuals and increase access to appropriate services.
Milestones in NODCC History
2002 – NODCC established as public organization under IRS governance
2003 – Hosted first NODCC Conference (Tulsa)
2004 – Launched first website – www.nodcc.org; Printed first educational booklet: Agenesis of the Corpus Callosum Basics
2005 – Printed educational booklet: Neurologic Issues in Disorders of the Corpus Callosum
2007 – Debuted children’s book, ACC and Me, written by Dr. Lynn Paul and Kathy Schilmoeller
2008 – Began physician and nurse outreach at medical conferences
2010 – Launched NODCC Facebook page
2015 – Created DCC Awareness Day with global sister organizations, AusDoCC and Corpal
2016 – Produced family video series on YouTube
2018 – Held 12th NODCC Conference in Costa Mesa, California
2021 – Hosted first virtual Global Celebration for DCC Awareness Day