NODCC Directors & Staff

 

NODCC Board of Directors

The NODCC is a 501(c)(3) not-for-profit corporation that is managed by a volunteer Board of Directors who meet in person twice a year, as well as via teleconference for committee meetings. Board members are chosen based on their potential to contribute to the board, either as professionals and/or as family representatives. Board members may serve a maximum of two consecutive three-year terms, and must be off of the board for at least one year before possible re-election to the board. Over half of the current NODCC board have family members with DCC.

Criteria for Directors

  1. Directors are professionals involved in the study of callosal disorders, professionals with certain skill sets, educators and practitioners with experience in the field of callosal disorders, and/or family members related to an individual with a callosal disorder.
  2. Directors are required to participate in the Board’s Give or Get policy, which runs on a calendar year. The Give or Get is $2,000 annually per Director. Funds can be direct contributions by Directors or contributions made to the organization on behalf of the Director. Excess funds donated do not carryover to the following calendar year. New Directors who join the Board mid-year are requested to contribute as much as possible until the end of that calendar year.
  3. Directors are required to attend the bi-annual Board meetings (July and February) and pay own travel and lodging expenses.
  4. Directors are required to serve on selected Board committees and task forces and perform specific tasks, which further the effort of the organization’s mission.

NODCC Standing Committees

Executive Committee composed of the standing committees’ chairpersons, the officers of the NODCC board and the Executive Director.

  • The Executive Committee under the stewardship of the President (until an Executive Director is hired) will serve as a decision-making body authorized to oversee the corporation’s daily business management and staffing in accordance with the annual budget and organizational goals set forth by the Board of Directors.
  • The Executive Committee will serve as a search committee and bring recommended candidates for the position of NODCC Executive Director to the Board of Directors for selection and hiring when funds are secured to support this position.
  • The Executive Committee is responsible to monitor the NODCC’s annual budget ensuring expenses are maintained as set by the annual budget and as approved by the Board of Directors.

The following committees are comprised of both Directors and general NODCC members.

Communications Committee – Responsible for development of organization’s website, literature, videos, audio, newsletter and other media communications. Responsible for copyediting and review of all such materials for quality assurance and brand integrity, with particular commitment to continuity of language, identity specifications, person-first language guidelines, prioritizing racial diversity and insuring brand integrity.

Development Committee – Supervises development of the organization’s infrastructure, facilitates long-range planning for the organization and conducts fundraising

Scientific Advisory Board – Coordinates research efforts, gathers and disseminates the latest information within the scientific, allied health, educational, and medical communities

Nominating Committee – Assesses the experience, talents and skills of potential Board Directors, and makes recruitment recommendations to the Board. This committee will be composed of at least 2 Directors and 2 non-Director NODCC members, with at least one family representative and one professional (Director or not).

NODCC Community Committee

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NODCC Board of Directors Officers

Steve Rumberg (President, parent, OH)
Lynn Snyder, Ph.D. (Vice President parent, IN)
Linda Martin (Treasurer, parent, TX)
Steve Jenkins (Secretary, parent, TN)

 

NODCC Board Members

Katherine Gee (parent & Adult with DCC, NY)

Paul Guilbault, M.D. (parent & family physician, LA)
Jennifer Little, M.A. (aunt, TX)
Kim Manning, J.D. (parent, PA)
David O’Brien (parent, CA)
Kip Oren, J.D. (parent, TX)
Lynn K. Paul (Sternberg), Ph.D. (psychologist & neuroscientist, CA)
Kevin Hight (parent, TN)
Eddie Piromsuk (parent, MO)
Traci Peterson (parent, VA)
Elliott Sherr, M.D., Ph.D. (pediatric neurologist, CA)
Linda Simpkins (grandparent, NJ)
Dana Snyder (Past President, parent, IN)
Blake Sudberry, D.D.S. (parent, OK)

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NODCC Staff

In addition to the Board of Directors, the NODCC office in Yorba Linda, California employs one part-time independent contractor to handle business administration, accounting, and program management. Barbara Fonseca was a founding board member of the NODCC. In 2005 she stepped down from the Board of Directors and began her position as the NODCC Managing Director, which has expanded to include multiple areas of responsibility.

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Board Member Biographies

 

Dana Snyder and her husband, Lynn, are the parents of an 21 year old daughter, Allison, who was diagnosed with complete agenesis of the corpus callosum at 5 months. Dana has Bachelor degrees in Christian Education, Music and Elementary Education, and a Master degree in Education with a reading specialization. She taught in public schools for 15 years in the areas of kindergarten and first grade.  Dana has attended the past thirteen NODCC conferences, was hosting co-chair of the 2009 NODCC Conference in Indianapolis and has been an active session organizer. Because of Allison’s multiple issues, Dana is fluent in PT, OT, speech and music therapy, hippotherapy, Harrington rod surgery, nissen fundiplication, lengthening of hamstrings and heel cords, hydrocephalus followed by shunting, and currently is on a steep learning curve on seizure medications and behavior modification. Her husband, Dr. Lynn Snyder, recently retired from Rolls-Royce management, continues to operate a 700 acre farm and just rejoined the NODCC Board of Directors. Dana served as the NODCC Board President and is currently completing her second term on the board.

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Steve Rumberg (president) and his wife, Orly, live in Cincinnati, Ohio with their eleven year old twins, Eliana and Olam. Olam was diagnosed with DCC just before his first birthday. Steve accepted a director position with the NODCC because “There is no organization more important in my son’s life right now than the NODCC. We have attended many conferences and I walk away from each conference with new ideas to explore. At our first conference my wife and I connected with a family from Wisconsin and our friendship over the past years has been an important support system.” Steve hopes to help other families by sharing what his family has learned over the past years on their journey with Olam. Steve has been involved in community activities since college.

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 Traci Peterson and her husband, Dan, live in Vienna, VA and are parents to Alyssa (6, c-ACC), Ryleigh (4), and Cameron (8 mo, HCC). Traci graduated from Villanova University with a BA in Psychology and Criminal Justice and a MA in Criminal Justice. She previously worked as an International Trade Consultant for the World Bank, and currently works as the Senior Administrator for Moms in Motion, a Medicaid Waiver facilitation company. Traci is also starting Nursing School in the fall of 2017 to learn how to better care for her girls complex medical issues.  Traci’s first conference was in San Antonio, TX in 2012, very shortly after learning of Alyssa’s diagnosis. It was a truly fortunate opportunity and their family instantly connected with many other attendees. They gained lifelong friends and a wealth of knowledge that aided in their ability to understand options to acquire services for Alyssa. These experiences continue to serve as the foundation upon which Alyssa’s very successful learning and development plan is based.  It also aides in building a foundation for Cameron to succeed as they begin the journey with her.

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Paul Guilbault, M.D. and his wife, Joanna, are parents to three sons, Matthew (12), Evan (8) and Reid (11) who was born with complete agenesis of the corpus callosum. Paul graduated from the University of Notre Dame with Bachelor’s degree in Mathematics and Life Sciences. He attended LSU Medical School in New Orleans and received the Gerald R. Gehringer Award for outstanding graduate for Family Medicine. Paul is a family physician with a private practice in Mandeville, LA. His personal interests are golf, the beach and family activities.

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Steve Jenkins (secretary) and his wife, Wendy, live in Germantown, TN, a suburb of Memphis. Steve and Wendy are the parents of Payton, Noah and Sutton. Noah was diagnosed with partial agenesis of the corpus callosum at 5 years of age. Steve is Staff Vice President in the Business Improvement Group of Anthem, Inc.. He has spent the majority of his career in the Medicaid industry. Steve is originally from Oxford, MS and received his BA in Psychology at the University of Mississippi. He also holds an MBA from Union University. Steve, Wendy and Noah attended their first NODCC conference in Boston in 2014. Almost immediately, Steve felt drawn to participate more fully in the organization, and is honored and humbled to be given the opportunity to serve as a member of the Board of Directors. Both Steve and Wendy see the NODCC and its members as an incredible source of support for their family, and hope their participation helps further the organization’s mission “to enhance the quality of life and promote opportunities” for Noah and others with a DCC by “raising the profile, understanding and acceptance of these disorders through research, education, advocacy and networking”.

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Jennifer Little, M.A. is a Senior Vice President/General Manager at MWW Public Relation in Dallas. She has two decades of experience in communications specializing in retail, restaurants/food and consumer technology industries. She has developed brand building programs, media relations strategy and events and cause-related initiatives for a wide range of companies. In addition, Jennifer is an adjunct lecturer in public relations at University of Texas at Arlington.

Jennifer graduated from the University of Texas in Austin where she majored in broadcast news and she received a Master’s degree in communications studies from Indiana State University. She is on the board of the Public Relations Society of America’s Dallas Chapter and is the chair of the annual Communications Summit hosted each fall. Jennifer is passionate about early childhood literacy and founded Little Hands Book Bank, a nonprofit that collects gently used books to provide a starter library to low-income children in the Dallas area who do not have books at home. She is also passionate about her niece, Abigail (Abby) Owens, a delightful 12-year-old with agenesis of the corpus callosum. Jennifer served as president of the NODCC for three years and has served on the planning committee for two DCC Conferences in Texas.

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Kim Manning, J.D. and her husband, David, live in Northeastern Pennsylvania with their 17 year old son Will, who has hypoplasia of the Corpus Callosum. Will is getting ready to start his senior year of high school this fall where he attends a life skills class along with American History and Chorus. He also works part time at the schools coffee cart and enjoys music, watching videos, running on his high school track, swimming, his therapeutic horseback riding sessions, the mall  and swings. Kim is an attorney specializing in healthcare law and working as in-house counsel for a large health system.

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Linda Martin is a new member of the Board, serving as Treasurer. Linda has an MBA and is a CPA. Linda raised four children in Dallas, TX. Her daughter, Lindsay, was diagnosed with cACC as a young adult. After attending her first conference in Boston in 2014, the positive impact on Lindsay was immeasurable. She understood why she is “different” and met other young adults with DCC. Linda joined the Board because she wants to give back to an organization that has given so much to her family.

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David O’Brien and his wife MaryLee, reside in beautiful, Lake Forest, California and are the proud parents of Connor (age 12), Kathryn (age 10), and Logan (5 ½). Connor was diagnosed with complete agenesis of the Corpus Callosum while still in Utero. Finding an overall lack of awareness and understanding of Connor’s condition within their surrounding medical community, David and MaryLee sought out and joined the NODCC a little over 3 years ago. Attending the San Antonio and, most recently, Boston conferences had a tremendous impact on Dave; prompting him to step up and join the Board of Directors.

David is originally from Staten Island, New York and has worked as a Vice President at a global investment bank in NYC. For the past 18 years he has been in the “IT” field, and is currently the Global Executive Director for a large medical device manufacturer. David holds degrees in Business Administration, Computer Science, and earned his MBA from Pace University. He also currently serves on the editorial board of SupportWorld magazine and was recently recognized by Computerworld magazine as one of its Premier 100 leaders. In his spare time David assists Connor along his Boy Scouts journey, Logan in T-ball, and daughter Kathryn with whatever she wants (that’s another story).

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Kip Oren and his wife, Kim, live in Austin, Texas. The Orens are the parents of two sons with differing neurological conditions. Their eldest son has been diagnosed with c-ACC. Kip hails from Muncie, Indiana, and is a graduate of Hillsdale College and the University of Miami School of Law. He practices commercial real-estate law in Austin, after having practiced in New York City for several years. Kip’s better half, Kim, is also a graduate of the University of Miami, and is a public-school teacher. Kip is an avid reader and a diehard Miami Hurricanes fan. 

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Lynn K. Paul (Sternberg), Ph.D. and her husband, Scott live in Tujunga, CA. Dr. Paul was the founding president of the NODCC and is currently president of the International Research Consortium for the Corpus Callosum and Cerebral Connectivity (IRC5). Dr. Paul is a Senior Research Scientist at California Institute of Technology, where she is directing a research program studying brain-structure, cognition and social processing in DCC. She received her Ph.D. in Clinical Psychology from Fuller Graduate School of Psychology working with Dr. Warren Brown and completed a post-doctoral fellowship in clinical neuropsychology from the Department of Neurology, UCLA.

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Kevin Hight and his wife, Paige, reside in Columbia, Tennessee where we have raised two amazing children, Max (23 – complete ACC) and Gracen (21). Max is a young man that is a joy to know. He enjoys being an assistant coach at Zion Christian Academy and being a part of any sporting event.  It is because of Max that we are part of this great organization and have had the opportunity to meet many outstanding families through the years.  Being from the Volunteer State, it seemed appropriate that I volunteer to be on the board and continue to support the NODCC in any way that I can.  I have a B.S. in Business Management from Tennessee Technological University.  I am part owner of South East Carriers, Inc. (an over-the-road trucking company) and Living Stone Freight Solutions, LLC. (a warehouse management and handling company).

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Eddie Piromsuk and his wife, Natalie, are parents to Shane (14) and Paige (11). Shane was diagnosed with complete agenesis of the corpus callosum just after birth when some indicators were noticed during a routine ultrasound. Originally from Los Angeles, Eddie graduated from California State University, Northridge with a Bachelor’s degree in Political Science. Today, Eddie makes his home is St. Louis, Missouri and is an HRIS Manager for Enterprise Rent-A-Car. Eddie enjoys spending time with his family, running, and rooting on his hometown LA teams.

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Elliott Sherr, M.D., Ph.D. is a Professor in Neurology and Pediatrics at UCSF. He directs the Brain Development Research Program, a group that studies the genetics and biology of Agenesis of the Corpus Callosum (ACC) and related disorders. Specific areas of interest include gene discovery and advanced brain imaging to unravel the intricate mechanisms of brain development. Dr. Sherr also directs the Simons Foundation imaging study for individuals with 16p11.2 deletions and duplications, the most common known genetic cause of autism. Additionally, Dr. Sherr serves as one of the principal investigators of a large epilepsy genetics consortium (http://www.epgp.org/epi4k/); he is directing efforts to discover the genetic causes of severe childhood epilepsies, such as infantile spasms. For his research, Dr. Sherr was the 2006 recipient of the Philip R. Dodge Young Investigator Award from the Child Neurology Society. Dr. Sherr is a board certified Child Neurologist and directs the Comprehensive Center for Brain Development and is co-director of the Neurometabolic program and clinic at UCSF. In these capacities, he cares for children with autism, epilepsy, developmental delay, and brain development disorders. He obtained his M.D. and Ph.D. at Columbia University in New York and completed his clinical training in Pediatrics and Neurology at UCSF. Dr. Sherr is a native of California and completed his undergraduate degree in Philosophy and Biology at Stanford University. He lives in San Francisco with his wife (a biotechnology executive) and his three children.

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Linda Simpkins is the mother of Traci Peterson and grandmother of Alyssa Grace Peterson, age 5, who was diagnosed with ACC just after her first birthday and Cameron Memphis Peterson, age 8 months, who was born with hypoplasia. She graduated from the College of New Jersey with a Bachelor in Business Management and currently works for one of Ron Jaworski’s Golf courses, Blue Heron Pines, in Egg Harbor City, NJ. She is married to Brad Simpkins and is mother/stepmother to 5 daughters with 11 grandchildren and one gretat-grandson! She attended her first conference in Boston right after Alyssa was diagnosed and found the organization to be invaluable to her entire family in understanding Alyssa’s condition and how to best help her to grow and develop. She hopes to bring to the Board her understanding and experience with fundraising and a sincere desire to assist any way she can.

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Lynn Snyder, Ph.D. (Vice President) and his wife Dana are parents of an 21 year old daughter, Allison, who has complete ACC. Lynn earned BSME, MSME and PhD in Engineering from Purdue University. He held technical and management positions with Rolls-Royce for 38 years. Currently he farms 700 acres of crop land. Serves at the Nomination Committee Chair. He has previously served on the NODCC Board.

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Blake Sudberry, D.D.S. and his wife, Tina, have three children, Hunter (19), Rylee (16) and Carter (10), who has partial agenesis of the corpus callosum. Hunter will be attending the University of Oklahoma in the fall of ’17 and will pursue a career in Dentistry there.  Rylee attends Plainview high school in Ardmore and Carter attends Oak Hall Episcopal school in Ardmore.  Dr. Sudberry is a dentist in Ardmore, Oklahoma. The Sudberrys are active in their church and draw strength from their faith. They also find the NODCC a great source of support and encouragement. After attending their first NODCC Conference, they found the strength and hope for which they were looking. The NODCC opened doors for networking, support and encouragement that were so needed. Each year since, the conferences have recharged the Sudberrys and given them encouragement to tackle the next year of life. Having received so much from the NODCC, Dr. Sudberry volunteered in 2014 to serve on the Board of Directors.  He is currently serving his second term as a board member.  His desire is to help preserve and grow the organization for the benefit of all affected by DCC.

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NODCC CENTRAL OFFICE

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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