About Us
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.
Our Mission
The mission of the NODCC is to enhance the quality of life and promote opportunities for individuals with disorders of the corpus callosum and raise the profile, understanding and acceptance of these disorders through education, advocacy, networking, and research.
Our Impact –
Highlights
6,000+
Attendees at the NODCC Conference from the U.S. and Abroad.
8,000+
NODCC Members on our Mailing Distribution List that receive important DCC content.
10,000+
Answered emails and phone calls supporting families impacted by DCC.
150+
Virtual events connecting, educating and supporting our DCC communities.
Our Vision
Awareness
Education
Advocacy
Research
Our Core Values and Guiding Principles
The NODCC is committed to uphold the following guiding principles in pursuit of our mission:
-
Respect for persons
-
Respect for families & communities of care
-
Diversity in board, staff, volunteers, & membership
-
Professional competence & integrity
-
Development of community through networking opportunities
-
Accessibility
-
Continuous improvement, learning, & refinement
-
Membership participation & teamwork
-
Compassion for the misunderstood
Financials
Strategic Plans
Our strategic plan outlines key initiatives and goals that will guide our efforts to strengthen our impact and create lasting change.
NODCC Founding Story
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.
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.
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.
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.