HISTORY OF THE NODCC
Report from Lynn K. Paul, Ph.D., Founding President
July 19, 2007
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.
Narrative of “how it all began” (as remembered by Lynn Paul who was there for it all)
At the 2001 ACC Family Conference in Yorba Linda, California, about 40-50 family members and interested individuals had a brainstorming discussion regarding the future of the ACC Network. Discussion focused on the need for an organization that could grow in response to the increasing requests for support and information regarding DCC. The ACC Network’s directors, Kathy and Gary Schilmoeller, expressed concern about several limitations to their organizational structure: 1. By being a component of the University of Maine, the ACC Network could not seek funding from foundations and other organizations without giving a large percentage of the donations they received to the university for overhead; 2. As part of the university, they were unable to sell any materials so they consistently had to raise enough funds to underwrite all materials they dispersed; 3. In 2001, the ACC Network was staffed primarily by Kathy & Gary, who donated their time, and as the need for family support was growing the situation was becoming too much for them to handle alone; 4. Families were viewing the ACC Network as a formal organization and were becoming very critical about the services provided, but with the current structure, all of that pressure and criticism was aimed at Kathy and Gary – a situation which the founding board believed was highly unjust.
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, hosted by the Hegny family, on Friday evening after the conference activities were complete, a small group gathered in the Schilmoeller’s hotel suite and generated the new organization’s name, mission statement, organizational structure, and preliminary agenda. Individuals at that meeting included Kathy & Gary Schilmoeller, Paul Moes, James Jewell, Warren Brown, Barbara & Anthony Fonseca, Donna Rosenbery, Donna Doherty, and Lynn Paul. The following day, Lynn & Barbara met with the attorney’s assistant (mother of a child with DCC) to confirm what additional information was needed, Lynn compiled notes from the night before, and the group gathered again after the Saturday conference activities. During that 5 hour meeting, it was decided to include additional parent representatives and the following people joined part-way through the meeting (after we found them at the pool and elsewhere in the hotel): Jo Ann Tully and Karen Dineen. Gary Schilmoeller agreed to contact Matt Levi and request his presence on the board as well (he wasn’t at the conference).
The organization name and vision statement were written as above. 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). It was determined at the time that one of the Schilmoeller’s should serve as an officer in order to add credibility to the new organization among the ACC community. Gary offered to serve as Vice-President. Barbara Fonseca offered to serve as secretary and since I was running the meeting, I became president. At a later date, Todd Carpenter was asked to serve at treasurer.
During that Saturday evening gathering, the newly formed board also agreed to plan the upcoming ACC Conference in Oklahoma (the Linfoot family offered to serve as local coordinators and the October date was chosen in order to allow additional time for attaining non-profit status and to avoid July heat in Oklahoma).
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 initial Bylaws were written by the attorneys and 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.
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.” At the 2005 summer meeting, the NODCC formed an “ACC Network/NODCC Task Force” to explore possibilities for a future merger and to discuss the best ways to coordinate activities between the organizations. The task force did not generate any new merger ideas and thus, the “sister organization” model is being followed at this time.
The NODCC was incorporated in October 2002 and received 501c3 non-profit status in September 2003.
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). Elliott Sherr M.D., Ph.D. (pediatric neurologist) joined the board in October 2003 and Stuart Gilkison, M.A. (social worker) joined in August 2004, increasing the total number of board members to 16.
Board Meetings & Fiscal Year
Annual board meetings have been held on October 10, 2003, August 5-6, 2004, July 28-29, 2005, and July 27-28, 2006. A mid-year board meetings were held February 18-19, 2006 and February 24-25, 2007, with the current annual meeting scheduled for July 19-20, 2007. The intention is to have twice-yearly meetings, with the summer meeting in conjunction with the conference and mid-year meeting in the venue for the upcoming conference.
The 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, it is difficult to efficiently handle the many post-conference duties and also prepare the corporation’s end-of-year paperwork in a matter of a few weeks. Therefore, 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).
At the 2003 annual board meeting, the following committees were established: Advancement & Development Committtee, Conference Committee, Media Committee, Membership Committee, Professional Education & Development Committee (PED), and Speaker Committee.
At the 2004 board meeting, the Advancement & Development, Speaker, and Membership Committees were disbanded and a Family Networking Committee was established. The Family Networking Committee was charged with working out how the NODCC could meet the family needs that were being service by the ACC Network, Committee was disbanded in Summer 2005.
At the 2004 meeting, the board also established an Executive Committee, consisting of the four committee chairpersons (B. Fonseca – conference, D. Doherty – family networking, K. Schilmoeller/M. Levi – media, E. Sherr – PED) and the board president (L. Paul). The Executive Committee was to conduct monthly teleconferences for monitoring committee activity, the annual budget, and administrative issues. As of 2004, the board president was endorsed to act as Executive Director until such a position was established and filled. During the 2004-2005 year, the Executive Committee met 9 times via telephone.
At the annual Board of Directors meeting in July 2005, the Family Networking Committee was disbanded and a Nominating Committee was established (chair – Matt Levi). Also at this meeting, a system of task-forces was developed. Whereas a committee is a permanent board entity that serves an ongoing organizational purpose, a task-force is a time-limited task-oriented group that will cease existence upon completion of its charge. In 2005, the following task forces were created: Resource Building Task Force (to create website restructuring, assist in developing the family partnership program, and set-up systems for local gatherings); Development Task Force (to assist in fund raising while the board searches for a permanent Development Director); the ACC Network/NODCC Task Force (to examine best plans for coordinating activities between these organizations).
In the annual meeting of July 2006, the following changes were made: Resource Building Task Force was changed to Website Task Force; the ACC Network/NODCC Task Force was disbanded; the Professional Education and Development Committee was renamed the Scientific Advisory Board; the Media Committee was renamed the Communications Committee; an Education Initiative Task Force was created (to create materials for families to take into schools).
At the February 2007 meeting, the Business Plan Task Force was created (to develop a 5-year business plan for review at the July 2007 meeting) and a Conference Scholarship Fund Task Force was created.
The first membership drive was launched at the first NODCC hosted conference in October 2003 in Tulsa, Oklahoma and the second drive was conducted via mail in July 2005. With assistance from Karen Brightly and Anne Eisenberg, the membership materials were revised and a five-level giving program was developed for the July 2005 mailing. Anne Eisenberg crafted the membership letter for June 2006 and the membership card was updated slightly.
In May of 2007, a new membership program was instituted (introduced in December 2006). The membership program requires annual renewal (a $45 suggested donation) for basic membership benefits (including option to contribute to Our Stories, participate in message boards, and participate in the Family Partnership Program Networking Center). Other levels of membership offer discounts for NODCC conferences and publications. The membership program is being refined as the website is developed.
In January 2004, NODCC established a central office in Yorba Linda, California, which allowed our volunteer staff person, Cathleen McCarthy (grandmother & organizational consultant) an office outside of her home. Finally, beginning in June 2004, we officially contracted Cathleen as our executive secretary, a 20-hour-a-week position (or more) involving coordination of administrative activities and special projects in the central office. Prior to the 2004 board meeting, all other professional assistance was donated by board members and volunteers (including legal filing, annual tax accounting, and fund-raising).
In the 2004-2005 fiscal year NODCC attained contracted assistance from a fund-raising expert (Karen Brightly, M.A.), an accounting firm (Stanislawski and Company Inc., 729 Mission St., Suite 100, South Pasadena, CA 91030: contact Charles Stanislawski, MBT, CPA), an attorney (C. Fred Cassity, 300 N. Lake Ave., Suite 928, Pasadena, CA 91101), and a firm that coordinates continuing medical education accreditation (U.S. Micron, LLC Division of Continuing Education, 600 Grant Street, Suite 610, Denver, CO 80203: contact JoAnne Wojak).
In November 2005, the administrative structure was reorganized to better meet our needs and to better utilize our contractors. The executive secretary position was terminated.
FACILITIES, EQUIPMENT & INVENTORY
As indicated above, the NODCC began renting an office space in Yorba Linda, California in 2004. The NODCC own 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)
This summer we will begin giving away copies of “ACC & Me” a children’s book introducing ACC. We have 4,000 copies (funding for these provided by Pizza Hut).
ACHIEVEMENTS TO DATE (July 2007)
- 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 was modified further at the July 2006 meeting to include membership sections. Website development continues at this time.
- 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, the third conference in Greenville, South Carolina, and the fourth conference in Irvine, California each had over 360 attendees including many adults diagnosed with ACC, as well as increased numbers of parents and practitioners.
- 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. Remaining copies of this product were given to the ACC Network in the fall of 2006.
- 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 Excel 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.
- At the 2006 conference, we recorded podcasts of various presentations which are now available on our website.
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