Organizational History
Board Development
Fiscal Calendar
Facilities, Equipment and Inventory 
Achievements 2003 - 2006 (by topic)

Organizational History

At the 2001 ACC Family Conference in Yorba Linda, California, about 40-50 family members and interested individuals had a brainstorming discussion regarding the need for a national non-profit organization that could reach out to families and professionals dealing with corpus callosum disorders. Following that discussion, Barbara Fonseca, who planned the 2001 conference, contacted an attorney who agreed to donate services for filing 501c3 paperwork to start a non-profit corporation.  At the 2002 ACC Family Conference in Minneapolis, Minnesota, a group of professionals and parents generated the vision of the NODCC, including the organization's name and mission statement. The goal was to create an organization that focused uniquely on corpus callosum disorders, which included both family members and clinical professionals on the Board of Directors.  By attaining non-profit status the organization could pursue a broad range of funding opportunities, sell materials when needed, and officially host an annual conference.  By implementing a formal board structure, the organization could be sustainable beyond the tenure of any individual member and could diffuse responsibility for decision making (and maximize input).  

The original 14 member Board of Directors included: Warren S. Brown, Ph. D. (neuropsychologist), Todd Carpenter, C.P.A.(Teasurer – parent & accountant), Karen Dineen (parent & business executive), Donna R. Doherty, M.S., R.N. (pediatric nurse),Barbara Fonseca (Secretary – parent), James E. Jewell (videographer), Matt Levi, M.A. (parent), Paul Moes, Ph. D.(neuropsychologist), Lynn K. Paul, Ph. D. (President – clinical neuropsychologist), Mel Peters, M.A., J.D. (attorney), Donna Rosenbery, Ph. D. (educational psychologist), Gary L. Schilmoeller, Ph. D. (Vice-President – parent & developmental and experimental psychologist), Norma Kathryn Schilmoeller, Ph. D. (parent & developmental and experimental psychologist), and JoAnne Tully, M.S., SLP (parent & speech-language pathologist). 

During the following year, Barbara Fonseca and Lynn Paul (in collaboration with Cathleen McCarthy who volunteered organizational assistance) worked with Thanh Bui from Leonard, Street & Deinard Attorneys (Minneapolis, MN) to incorporate the organization and attain 501c3 status.  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 office space, our only mailing address was a post-office box.  This was not sufficient for a legal organizational address and thus, our legal address became the Leonard, Street and Deinard office in Minneapolis. The NODCC was incorporated in October 2002 and received 501c3 non-profit status in September 2003.  

One of the initial concepts in creating this organization was to eventually merge the work of the ACC Network with the NODCC.   However in April 2005 the ACC Network announced that they were going to remain an independent organization under the auspices of the University of Maine. Kathy Schilmoeller met with the NODCC Executive Committee via teleconference in May 2005 and clarified that the ACC Network believed it was best to function as “sister organizations.”  

Board Development

The Board must have at least 15 members, 8 of which must be related to an individual with a corpus callosum disorder.  The current NODCC Board of Directors is listed on this site under NODCC Administration.

Fiscal Calendar

The NODCC fiscal year was originally set from September 1 – August 31, beginning with the date of incorporation. The purpose of this was to facilitate membership drive “kick-off” at the summer conference. However upon recommendation of the staff, at the annual board meeting in July 2005, the Board decided to shift to a calendar year beginning on January 1, 2006, resulting in a four-month (September through December tax filing for 2005). The annual budget is approved by the Board of Directors, with monthly financial reports monitored by the Executive Committee.

Facilities, Equipment and Inventory

The NODCC began renting an office space in Yorba Linda, California in 2004.  The NODCC owns a corporate cell phone, an office phone, a fax/copier, and a PC.  The office space is currently furnished by the Program Director (Cathleen McCarthy). 

The NODCC logo and branding were designed in 2003 by Kristian Andersen and Associates in Indianapolis, Indiana. We are currently in the process of getting the NODCC logo trademarked.

Since 2003, the NODCC has sold various products at our conferences, including:

• T-shirts & Sweatshirts
• Disorders of the Corpus Callosum Vol. 1 Booklet
• Living with ACC (VHS & DVD)
• ACC Basics (VHS & DVD)
• Neurologic Issues in DCC (DVD)
• The ACC Network Album

The NODCC also produced two brochures in 2004:

• Disorders of the Corpus Callosum (second reprint in May 2006)
• NODCC (organizational brochure, not reprinted)

Achievements 2003 - 2006 (by topic)

Designed and produced an educational brochure about Disorders of the Corpus Callosum and a brochure introducing the NODCC.  These are the first brochures of their kind which provide fundamental information about callosal disorders and direction toward NODCC resources for additional information.  This was reprinted in May 2006.

• Designed and implemented the NODCC web site (www.nodcc.org) as a resource for people looking for information about ACC on the Internet. This was originally designed by Chris Hall, with very limited funds under the domain name www.corpuscallosum.org. In spring 2003, with funds from a generous personal donation the design was updated by Kristian Andersen and Associates and hosted through Server Side and the domain name was changed shortly thereafter to www.nodcc.org.  This site was designed with the intention that it would be easy to update by anyone in the organization.  However, it turned out to be very inflexible and any structural changes or additions were very expensive.  In February 2006, the NODCC board endorsed a website redesign, which will be implemented throughout the coming year.  The new website will be less expensive to maintain and update, plus will introduce many new features.
• Wrote, edited, and produced an educational booklet entitled: Introduction to Agenesis of the Corpus Callosum and Other Callosal Disorders.  This is first in a series of educational booklets targeted at providing information to families and service professionals.
• Produced three educational DVDs.   

Living with ACC (edited by Kathryn Schilmoeller and James E. Jewell) presents individuals with ACC and siblings of individuals with ACC in panel discussions at the Connecticut ACC Family Gathering in 1999. 

ACC Basics: Neuroanatomy, Callosal Functions, and Cognitive Process is a series of two lectures presented by Warren Brown, Ph.D. at the ACC Conference 2003.

Neurologic Issues in Disorders of the Corpus Callosum is a series of two lectures presented by Elliott Sherr, M.D., Ph.D. at the ACC Conference 2004. 

• Presented four international annual ACC Conferences (renamed the Disorders of the Corpus Callosum Conference in 2006). Organized by local families who volunteer their time and expertise, in collaboration with the NODCC conference committee and administrative contractors, each year’s conference has grown in size and reach. The first conference held in Tulsa, Oklahoma in 2003, was attended mainly by parents and family members of people with ACC, as well as a handful of practitioners. The second conference in Madison, Wisconsin and third conference in Greenville, South Carolina, each had over 360 attendees including many adults diagnosed with ACC, as well as increased numbers of parents and practitioners. At the 2006 conference in Irvine, California we anticipate our highest attendance yet.
• Attained Continuing Medical Education Accreditation from the accrediting board of the medical community for the ACC Conference 2005 & 2006; an important incentive for gathering physicians to the conference. Many comparable professional licensing boards will also recognize the NODCC conference CME credits to satisfy their own professional continuing education requirements. For the 2006 conference, a special mailing has been sent to various medical and therapeutic professionals in the Southern California area.  This advertising and promotion effort is increasing awareness of disorders of the corpus callosum and the NODCC across the medical community.
• Collaborated with the ACC Network on the publication and distribution of its ACC Network Album, a collection of brief introductions to individuals with callosal disorders.
• Completed our first targeted mailing to the entire 1500-member roster of the Pediatric Neurology Society. By addressing those professionals on the front lines of diagnosis, equipping them with information about disorders of the corpus callosum and linking them to the NODCC’s conferences, website and expanded networks, we are meeting the needs of families more immediately and effectively.
• In 2005. financial records were converted from Exel to Quickbooks for more efficient management by our Business Director.
• In 2006 we attained a California sellers permit so the NODCC can sell products including booklets, VHS/DVDs, and the ACC Network Album.