HISTORY OF THE NODCC

Mission

National Organization of Disorders of the Corpus Callosum (NODCC) mission statement is “to enhance the quality of life of individuals with agenesis of the corpus callosum and other disorders of the corpus callosum by gathering and disseminating information regarding these conditions.” We are fulfilling our mission by collecting and presenting expert multi-disciplinary and accessible resources for all those dealing with callosal disorders.
Because a firm diagnosis of callosal disorders has only been possible since the advent of the MRI, this range of conditions is only beginning to be understood. In fact, promoting accurate diagnosis is a considerable part of our agenda. The confusion surrounding misdiagnosis can be agony for parents and potentially cruel to children, as the expectations raised by wrongly prescribed therapies and treatments lead ultimately to frustration and failure. Preventing this misdirection and providing accurate information and effective solutions are high priorities for the NODCC.

Our Beginnings

This is a story about a young mother whose child was born with a malformation of his brain (a disorder of the corpus callosum) and her perseverant journey to inspire and create a national non-profit organization to support families and individuals living with this disorder.

In 1998, Nathan Fonseca was born full-term and healthy. Nothing seemed out of the ordinary at the time. But over the next few months, his parents, Barbara and Anthony, became concerned that he was so very quiet, he was not meeting milestones, and he seemed to never look to his right side. They were concerned he might be blind in his right eye.

Barbara was persistent with the pediatrician (who thought there was nothing wrong with Nathan) in getting a referral to an ophthalmologist who determined Nathan was not blind. The ophthalmologist referred Nathan to a pediatric neurologist who ordered a CAT scan. Barbara and Anthony received Nathan’s diagnosis of hypoplasia of the corpus callosum by the time he was eight months old.

The corpus callosum is the largest connective pathway in a human brain. It is made of more than 200 million nerve fibers that connect the left and right sides (hemispheres) of the brain. Disorders of the corpus callosum (DCC) are conditions in which the corpus callosum does not develop in a typical manner. Since these are disorders of brain structure, they can only be diagnosed by brain scan.

The corpus callosum cannot regenerate or degenerate, once the infant’s brain is developed, no new callosal fibers will emerge. Long-term developmental, physiological, neurological, social, behavioral and cognitive challenges are associated with a DCC. For a full explanation of this birth defect and its consequences, please see http://nodcc.org/corpus-callosum-disorders/.

When Nathan was diagnosed a DCC was considered a rare disorder with an incidence of 1 in 10,000 births. Current research suggests 1 person in 3,000 is affected by some disorder of the corpus callosum. And, the rate of diagnosis of these disorders is likely to increase with greater access to the brain scanning technology.

In 1999 the neurologist told Barbara and Anthony there was no single cause for malformation of the corpus callosum and many different factors could interfere with its development including:

  • Prenatal infections or viruses (e.g. Rubella)
  • Chromosomal (genetic) abnormalities (e.g. Trisomy 8 and 18 and Aicardi syndrome)
  • Toxic metabolic conditions (e.g. Fetal Alcohol Syndrome)
  • Blockage of the growth of the corpus callosum (e.g. cysts)

Nor did the neurologist offer an informed prognosis. He simply said they would just need to wait to see how Nathan developed. Barbara knew none of the above factors were relevant to her child’s fetal development so she conducted an extensive Internet search on the disorder.

Researching the Internet in those days produced very little positive information regarding a DCC. Most of the studies indicated dire consequences including mental retardation and the inability to meet developmental milestones. However, in her search Barbara discovered The ACC Network, affiliated within the University of Maine’s College of Education and Human Development.

Founded in 1989 by Gary and Kathryn Schilmoeller (both Developmental and Experimental Psychologists), whose son was living with agenesis of the corpus callosum, The ACC Network was a small organization that maintained a networking directory, published a printed newsletter, and sponsored an online discussion board focused on disorders of the corpus callosum and related issues.

The Schilmoellers connected Barbara and Anthony to a few families in the Los Angeles area, and told them about a family gathering in Ohio in the summer of 2000. Barbara and Anthony attended this gathering and were overwhelmed by the vast differences in those affected by a DCC. Some individuals appeared highly functional, whereas others were extremely low functioning with very apparent and serious disabilities.

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. Kip was the inspiration for the character of Raymond Babbitt (actor Dustin Hoffman) in the movie, Rainman.

Returning from Ohio Barbara and Anthony were even more perplexed on the implications of Nathan’s disorder and concerned about the lack of information on how to raise a child born with a DCC. So Barbara decided to host a 3-day conference in their hometown of Yorba Linda, CA to help families connect to one another and to feature a few professional presentations and resources.

The first family conference sponsored by the Fonseca family was held in the summer of 2001 in the Yorba Linda Community Center with 200 people attending from across the U.S. and internationally. Key researchers in the study of DCC, Drs. Lynn K. Paul, Gary Schilmoeller and Kathryn Schilmoeller lectured on neurological, psychological and behavioral aspects of DCC. The cost to attend the event was $35 dollars and the Fonseca’s family and friends cooked spaghetti for the attendees in the center’s kitchen the first night. The gratitude and enthusiasm of the attendees for the opportunity to meet and share their heartaches and hope was profound. Many families volunteered to host a family conference in the coming years in their home state.

In a Saturday evening social gathering of attendees Gary and Kathy Schilmoeller, directors of The ACC Network, noted The ACC Network was required to give a large percentage of the donations they received to the University. They were unable to sell any printed materials so they had to raise funds to underwrite the production of all collateral. They could not financially support family gatherings or conferences, and the organization was staffed primarily by Schilmoellers who donated their time.

As the need for family support was growing, the situation was becoming too much for the Schilmoellers to handle alone. There was discussion among those gathered that evening on the need for the creation of a national organization that could continue the grass roots mission of The ACC Network with the ability to seek funding, sponsor conferences, and produce resource materials.

In 2002 at the second family conference in Minneapolis, Minnesota hosted by the Hegny family, a small group of interested families, researchers and affiliated practitioners gathered to formally organize the National Organization for Disorders of the Corpus Callosum (NODCC), its mission statement, articles of incorporation and Bylaws with professional guidance.

The founding board of directors and officers consisted of:

Dr. Warren Brown Matthew Levi
Todd Carpenter (Treasurer) Dr. Paul Moes
Karen Dineen Dr. Lynn K. Paul (President)
Donna Doherty Donna Rosenbery
Barbara Fonseca (Secretary) Dr. Gary Schilmoeller (Vice President)
Anthony Fonseca Dr. Kathryn Schilmoeller
James Jewell Jo Anne Tully

Thanh Bui, Leonard, Street & Deinard Attorneys (Minneapolis, MN) offered pro bono services and filed IRS Form 1023, Application for Recognition of Exemption Under Section 501(c)(3) of the Internal Revenue Code in the state of Minnesota.

During the following year President Dr. Lynn K. Paul, a neuropsychologist and research scientist and Barbara Fonseca as Board Secretary collaborated with Cathleen McCarthy (grandmother to Nathan Fonseca and business consultant who volunteered organizational assistance) worked with attorneys to incorporate and structure the organization. This required several rounds of additional submissions to confirm our organizational value as a group of professionals and service providers. Since the NODCC did not have an official office space, our legal address became the Leonard, Street & Deinard office in Minneapolis. It was a huge undertaking on the part of Dr. Paul, Cathleen and Barbara to create the foundational components and administrative functions of the NODCC, and we are grateful for the time and effort they spent in a volunteer capacity to get the organization off the ground.

The NODCC received 501(c) 3 non-profit status in September 2003 and in October the first Disorders of the Corpus Callosum Conference sponsored by the NODCC and hosted by the Linfoot family was held in Tulsa, Oklahoma. The organization’s launch was enthusiastically received by the attendees who all submitted their first memberships.

In 2003 Dr. Paul directed the NODCC logo design and branding by Indiana firm, Kristian Andersen and Associates. The NODCC mailed requested complimentary brochure/resource information, and sold NODCC t-shirts, sweatshirts, the Disorders of the Corpus Callosum Vol. 1 Booklet, VHS/DVDs of videotaped conference sessions (Living with ACC, ACC Basics and Neurologic Issues in DCC, and The ACC Network Album. The organization’s original website launched in January 2004 was designed by programmer, Chris Hall, at a cost of $1,500 and was hosted by Hostway.com for $32/month.

In January 2004 NODCC established a small (150 square’) office in Yorba Linda, California, which provided our volunteer staff person, Cathleen McCarthy, an office space outside of her home. In June 2004 Cathleen was contracted as executive secretary, a 20-hour-a-week contractor position involving coordination of the organization’s administrative activities and special projects. At that time, the NODCC owned a corporate cell phone, an office phone, a fax/copier, and a personal computer.

Prior to the 2004 board meeting, all other professional assistance was donated by board members and volunteers (including legal filing, annual tax accounting, fundraising and conference planning). In 2004-2005 NODCC retained contracted assistance from fundraising expert, Karen Brightly, M.A.; Pasadena accounting firm, Stanislawski and Company Inc.; Pasadena attorney, C. Fred Cassity; and Colorado continuing medical education (CME) accreditation firm, U.S. Micron, LLC.

A new website launched in September 2004, was designed by Indiana firm, Kristian Andersen & Associates, at a cost of $10,234 under Dr. Paul’s guidance. This firm was selected based upon their expertise in website design for non-profit companies. Now hosted by Serverside for a monthly charge of $99, the site was built in asp.net language customized to allow NODCC administration to change text in existing pages without incurring designer cost. However, any change to the front page, creation of a new page, creation or change to any interactive online form, or creation of a new link required the expertise of a designer to lay out the page, and a programmer at Serverside to translate the layout/text into the site’s custom language.

One of the primary reasons in creating the NODCC was to merge the work of The ACC Network and the NODCC with the Schilmoellers serving as the NODCC’s spokespersons in community outreach. However, in April 2005 the Schilmoellers decided The ACC Network would remain an independent organization under the auspices of the University of Maine with the NODCC and The ACC Network functioning as “sister organizations”.

The original Bylaws written by the attorneys were fairly generic. At the 2005 Board of Directors meeting, after extensive deliberation by the executive committee and the Board, the Bylaws were significantly amended to better reflect the desired organizational structure and to provide sufficient guidance for future Board members. These Bylaws were again reviewed and updated in 2016.

The NODCC’s administrative structure was reorganized to better meet the needs of the organization. The executive secretary position was terminated and Cathleen McCarthy took on the duties of Program Director. Barbara Fonseca resigned as a member of the Board of Directors and took on the duties of Business Director. The position of Development Director was filled at a later date.

A $15,000 gift from the Boren Family Foundation afforded the institution of Continuing Medical Education (CME) accreditation for the DCC Conference 2005 by U.S. Micron, and the acquisition of an annual Director and Organization Liability Insurance policy effective July 2005. The Board instituted a $2,000 per Director Give or Get annual donation in order to ensure the coverage of administration costs and to show potential large donors and grantors the Board was financially committed to the success of the organization.

In 2008, Cathleen McCarthy resigned as Program Director to serve as a volunteer and Board Director. At that point Barbara Fonseca stepped up to manage the administrative duties of the organization. She also continues to serve as the DCC Conference Director since 2003, a biennial 3-day event now attended by over 600 people. Greatly expanded from the simplistic first family conference she coordinated the summer of 2001 in the Yorba Linda Community Center!

We are extremely grateful the family members, professionals and scientists who have served on the Board of Directors over the years. These people not only donate their time and expertise to guide the maintenance and growth of the organization, they also donate thousands of dollars a year to ensure the organization’s financial stability.

Dr. Lynn Paul served as President and Past President on the NODCC’s Board of Directors for five years providing solid leadership in the early years of the organization. Since 2008 the NODCC has greatly benefited from the generous donation of time and expertise from its succeeding Presidents: Matt Levi, Jennifer Little, Chad Elseth, Amanda Heyser, Dana Snyder and Steve Rumberg.

So where is the NODCC today…

Continued organizational growth
Since the NODCC’s inception there has been continual development of new programs to help individuals living with a disorder of the corpus callosum and their families. As the leading organization we continue to answer phone calls and email from newly diagnosed individuals and families and field questions from the public on DCC; mail requested informational materials; maintain an interactive website containing numerous resources; conduct a biennial 3-day family and professional conference in alternating regions; administrate NODCC social media pages, exhibit at medical professional conferences; and provide coordination support to families interested in hosting regional gatherings and fundraisers.

Increased awareness and diagnosis
Since the NODCC was founded in 2003, awareness of developmental corpus callosum disorders has increased markedly among medical professionals, educators, and the broader public. Within the medical community, these diagnoses are more consistently identified and reported by radiologists doing MRIs and CT scans and by obstetricians doing detailed ultrasounds in the second half of pregnancy.

Increased access to and use of brain imaging
Also in 2003, the American Academy of Neurology began recommending a MRI evaluation for children with developmental delay in 2 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.

Improved access to high quality information
High quality information about DCC is now widely accessible through NODCC.org, the annual DCC Conferences, the NODCC Facebook page, and published brochures, booklets, podcasts, videos and a children’s book (ACC and Me). Both professionals and individuals with the diagnosis now have far greater access to information relevant to their specific concerns.

Better therapy and teaching
Utilizing insights gained from research into the cognitive impact of DCC, physical, occupational, and speech therapists, schoolteachers and psychologists have made great strides in developing more effective treatment and teaching strategies. As diagnostic processes improve and more children with DCC are identified, more teachers and therapists are gaining experience working with someone who has DCC, often misdiagnosed as a behavioral disorder, e.g. autism spectrum, OCD, ADD, etc.

More completed research and understanding
Research on the causes and behavioral outcomes of DCC has gained great momentum over the past 20 years. Through this work, the picture of DCC-related developmental challenges and changes across the lifespan is coming into focus. In turn, insights about the physical, educational, social, and emotional patterns in DCC form the foundation of current and future interventions.

New ICD 10 code
As of October 2015, DCC has its own diagnosis code. This will provide a more accurate estimate of the number of diagnosed individuals and increase access to appropriate services.

And, what about Nathan???

Nathan’s developmental progress was considerably delayed. His family spent hours daily showing him how to roll over, trying to find something to interest him enough to move his body or try to reach (a mechanical Mickey Mouse toy finally motivated him.) He didn’t roll over until 10 months; scooted at 12 months; jungle crawled at 1 ½ years; didn’t get up on his knees and crawl until 2 years; didn’t walk until 3 years; and became toilet trained at 6 years.

He started running at age 8, learned to ride an adult tricycle when he was 13 years old and as a young adult he continues to be physically challenged, unable to read or write, and is non-verbal with a few basic signs and sounds – but he understands everything including subtle inferences and looks.

Nathan is the most wonderful young man with an incredible spirit. He is clever in his own right, has a quirky sense of humor, and is very savvy working with communications technology. Although his speech and signing is limited those close to him understand him the majority of time in terms of his needs and he appears to understand us all the time. He is always smiling, and captures everyone’s heart.

Nathan is aware he is different and he understands his physical limitations. Although he needs to be constantly monitored, he is not treated differently at home because of his disorder. He is expected to perform appropriate to his limited capabilities.

As Barbara and Anthony say, “Life with Nathan is a heartwarming experience, there are times of sadness and disappointment, but the joy and laughter he brings far exceeds any heartache– we are so very grateful he came to our family – he has absolutely changed all our lives for the better!”

But Nathan’s story is only one story of the thousands of people living on this planet with a disorder of the corpus callosum. Today they are being diagnosed in utero as well as into late adulthood. And, it is the desire of the NODCC to continue to expand its services in order to reach them.

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PMB 363, 18032-C Lemon Drive, Yorba Linda, CA 92886
Phone: (714) 747-0063
Fax: (714) 693-0808
Email: info@nodcc.org
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