Ongoing Adult and Children Online ACC Studies, California Institute of Technology Pasadena

Nate Barge

My name is Nate, and I’m proud to serve on the inaugural NODCC Board of Ambassadors. Diagnosed with complete ACC at birth, I became more aware of my condition around age seven and have since embraced advocacy and education through NODCC, which my family and I have been part of since 2001. The community has become like family to us, offering support, connection, and purpose. I’m passionate about helping others understand ACC and encouraging acceptance through shared experiences. Over the years, I’ve also spoken with families, professionals, and peers to help bridge the gap between lived experience and awareness. My advice to young ACCers and their families is to find a passion—mine was baseball. That love led me from playing and managing teams to earning a communications degree and now working in social media for Edgewood University’s baseball program.

Dennis Koenigs

Dennis Koenigs, shared, “Having a son with ACC, my wife and I have difficulty explaining the condition. Most people, even family, don’t “get it”. When we’re with people from the NODCC, they “get it”. It’s a family that is always there for you.” Dennis is now part of the board, because helping others find a community that “gets it” is important to him. Dennis became most involved with the NODCC around 2020 when his family needed contacts to assist them. His family needed to gain understanding about their son, Donovan, and his journey in ACC as he transitioned into adulthood. Dennis found the contacts he made through the NODCC to be indispensable. His family attended the Frisco and Chicago conferences, and Dennis soon realized the NODCC was an organization he would like to assist in its mission. As Dennis approaches retirement, I felt a need to “give back” to those that have helped his family, and the NODCC is one of those organizations. As a board member, he is excited to see increased membership and help to grow the group’s ability to contribute to research. To anyone considering getting involved with the NODCC, Dennis offers, “Don’t hesitate. The adage ‘many hands make for a light load’ comes to mind. We all have gifts to share and contributions to make.” When not busy being a board member, Dennis spends time with his four children and five grandchildren. He also enjoys hunting, fishing, and spending time outdoors, and working on projects around the house.

Kim Manning

Kim Manning is actually on her second round of board service, and this is because she has been a part of the NODCC dating back to 1999 when the very first email list was put out! She is a fixture in our NODCC community, and like Jyothish, her child is 26 years old! Kim’s son, Will, has hypoplasia of the Corpus Callosum. Her most treasured part of being the on the board thus far has been watching the organization grow and meeting other families. When asked what upcoming initiatives she’s excited about, Kim shares, “The new website and helping other families through these changing times.” We love Kim’s practical outlook when asked about the benefits of investing your time and energy into the NODCC. She shares, “The ability to have community in this journey far outweighs the minimal investment of time that may be asked of you.” We couldn’t agree more. Our community is unmatched! Kim would love for everyone to know about the research we invest into NODCC’s research avenues, and not only the community-related elements so many are familiar with. Kim’s future goals for the organization are making sure we can offer tools to navigate the various systems and programs intended to help. Kim’s once-upon-a-time attendance at a conference “need for volunteers” breakfast sparked her activism in our organization, and now the rest is history!

Jyothish Daniel

Jyothish Daniel strongly believes the NODCC is a fabulous organization serving the needs of many families, and he’s right about that! Jyothish became acquainted with the NODCC circa 2003-2004. His daughter, who is now 26, has full Agenesis of the Corpus Callosum, and Jyothish was inspired to join the board because his family has been supporters of NODCC for many years. Gratefully, his professional schedule now allows for it. While Jyothish is just getting started on the board, he looks forward to helping the organization fulfill its goals and mission, especially because it serves the needs of so many. He wishes more people knew how many resources this organization can help people access. He hopes to assist in increasing membership and fundraising which will enable NODCC to do even more good for others in the coming years.

Ilana Davlin

Hi! My name is Ilana, and I’m proud to serve as both an ambassador and a member of the Board of Directors for the NODCC. I was diagnosed in utero with partial Agenesis of the Corpus Callosum back in 1993 — something that was incredibly rare at the time. I always knew I had it, but it wasn’t until I was 24 and did a quick Google search that I truly began to understand what it meant. That moment led me to the NODCC, and my life instantly changed.

For someone born without the full structure that connects the two sides of the brain, I’ve somehow found some of the strongest connections through this community. The relationships I’ve formed are truly some of the best, and I’m so grateful for each of them.

I’m passionate about advocacy, connection, and helping others feel seen — whether through storytelling, humor, or simply being the person who listens when things get hard. Outside of this role, I love live music, making people laugh, and spending time with my chosen family, who are a constant source of encouragement and support. I believe that sharing our experiences helps break down stigmas and builds bridges. I’m honored to be part of a community rooted in heart, compassion, and a deep commitment to understanding one another.

Alexa Smith

My name is Lexy, I am 28 years old with partial ACC. When I was in my mother’s womb, my parents were told that I had partial ACC, and I was told by my parents when I was approximately 4-5 years old. Growing up knowing of my diagnosis helped me be more empathetic to other people. At a young age, I persevered through multiple surgeries for excess CSF in my head (hydrocephalus), epilepsy, Arnold Chiari malformation (surgery twice for that diagnosis), and many therapies to get me to where I am today. Some hobbies of mine are swimming, snowmobiling, and reading romance/fantasy books. I am also a college graduate with my associate’s pursuing a bachelor’s degree in social work. I have experience owning my own home previously. I am an active member of the Community and Adults Committee and look forward to being a part of the Ambassador program through the NODCC as well.

Bailey Johnson-Seay

Communications Director

Bailey joined the NODCC team in 2022 and enjoys serving as the Communications Director, where she leads strategic initiatives to raise awareness, support families, and connect community members. She lives in Waxahachie, Texas, with her husband, Samuel, and their dachshund-pit mix, Moose. In addition to her work with the NODCC, Bailey also serves as the Director of Marketing for a nonprofit organization based in West Texas.

A proud graduate of Texas Tech University, Bailey began her career in nonprofit communications in 2019. She specializes in social media content creation and strategic communication development. Outside of work, she enjoys long walks with Moose, discovering local coffee shops, and cheering on her beloved Red Raiders. Wreck’em!!

Miriam Bernard

Storyteller

Miriam Bernard joined the NODCC team in October 2022 as the unofficial “Storyteller”. She has the rewarding job of telling the unique and varied stories of our NODCC community members. Miriam is an educator by day, and a budding freelance writer by night. She loves using her passion for the written word to share the inspiration and joy brimming within the NODCC family. Miriam is a graduate of Azusa Pacific University and resides in Pomona, CA with her husband of 17 years in a tiny, century-old craftsman bungalow. In her spare time, she reads in the rocking chair on her porch, mixes cocktails, and eats a lot of pickles.

Ella Bohlman

Executive Assistant

Ella Bohlman joined the NODCC team in December 2024 as Executive Assistant to the board of directors. She assists the board with organization and scheduling so that they can continue to lead and improve the NODCC! Outside of this role, Ella works as a research assistant, where she studies development in infants and kids with disorders of the corpus callosum. She is currently in partnership with the NODCC to complete a natural history study! Ella just completed her bachelor’s degree at the University of Illinois, and now lives between Chicago and St. Louis. In her free time, she loves to crochet, read, and watch movies!

Barbara Fonseca

Executive Director

Barbara Fonseca serves as the Executive Director for the National Organization for Disorders of the Corpus Callosum (NODCC). Her current duties include all accounting and finances for the NODCC, assisting the Board of Directors, maintaining records, coordinating and exhibiting at medical conferences, managing the NODCC e-mail, overseeing vendor developments, assists as regional “first responder” for the family support groups, and administration. Prior to working with NODCC, Barbara worked in the sales industry. She also has her own company, handling financial accounts and payroll for other companies.

In the summer of 2001, Barbara’s family and friends sponsored a 3-day conference at the Yorba Linda Community Center. The conference addressed the issues of living with DCC, brought families and professionals together, and inspired a group of individuals to form the NODCC in 2003.

Barbara’s passion for the NODCC is very personal, as her own son, Nathan, was diagnosed with a corpus callosum disorder at eight months old. The struggle she faced in having a lack of resources and information inspired her to help create the NODCC and its community. Barbara understood the number of families who are diagnosed and have nowhere else to turn and finds joy in helping families come together for education and support.

Jennifer Little, MA

Jennifer Little has been involved with the NODCC since attending the conference in South Carolina in 2005 with her sister and late niece, Abby. Born with partial agenesis of the corpus callosum, Abby also battled leukemia most of her life and passed away in May 2021. Jennifer has been a passionate supporter of the organization since 2005 serving as the Board President, head of the communications committee, helping host conferences in Texas, working as a communications consultant and leading the nominating committee. Jennifer has enjoyed a career in public relations for 30 years and is currently an executive vice president at global communications agency, BCW. She graduated from the University of Texas in Austin where she majored in broadcast news, and she earned a master’s degree in Communication Studies from Indiana State University. Jennifer lives in Frisco, Texas with her teen son, Jamison.

Jasmin Turner, MA

Jasmin Turner is a PhD student in the Clinical Psychology program at the University of Iowa. She works in the Social Cognitive Neuroscience Lab, where her research focuses on brain connectivity underlying emotion and social cognition. Her work ultimately aims to better understand social-emotional development and mental health outcomes in individuals with brain malformations and neurodevelopmental disorders.

Prior to her PhD, Jasmin earned her MA in Clinical Psychology at California State University, Northridge. She continued her academic journey as a research coordinator at Caltech, where she worked alongside Dr. Lynn K. Paul, studying behavioral development in infants and children with agenesis of the corpus callosum. In 2018, Jasmin experienced her first NODCC conference which fueled her passion for working with individuals affected by disorders of the corpus callosum. Beyond her research experience, Jasmin actively supports individuals with a DCC and is dedicated to enhancing the mental well-being of those within the NODCC community.

Elliott Sherr, M.D., Ph.D.

Elliott Sherr, MD, PhD 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. 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 MD and PhD 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 college and graduate school bound children.

Layton Shaffner, MBA

Layton Shaffner, MBA has worked in software implementation for 20 years and is currently a Client Partner for an HR Consulting Organization. He has a Bachelor of Science in Psychology from Texas Christian University, and an MBA from the University of Texas at Arlington. Layton and his wife Jana live in Dallas where they are doing their best to keep up with their son Logan (14) and daughter Allie (10). Logan was diagnosed with complete agenesis of the corpus callosum a few days after his birth. Layton found the NODCC soon after Logan’s birth, attended his first NODCC Conference in 2010 where he was energized by the network and knowledge of the organization, and he and his family have attended every conference since. Layton is a swimmer, cyclist and avid college football and basketball fan when he isn’t keeping up with his kids’ growth and activities.

Leann Schouten, ClinScD, CCC-SLP, HLA

Leann Schouten, ClinScD, CCC-SLP, HLA is the co-owner of Jump and Schout Therapy, a multidisciplinary private practice in Brea and Chino California. She has been practicing for over 20 years and specializes in motor disorders. In her practice, she provides speech and language services to toddlers, preschoolers, school-age children, and adults. Dr. Schouten is the founder and CEO of the Jump and Schout Foundation, nonprofit organization providing medical equipment, supplies and trainings to families and children in the surrounding community. Jump and Schout Therapy works closely with nearby universities to provide site supervision for graduate and undergraduate externship students. She has expanded her knowledge and growth in the field of communication disorders and sciences as an adjunct faculty member at Chapman University, and currently serves on the board for the California Speech and Hearing Association.

Don Peterson

Don Peterson is retired after a 30-year career in the telecom equipment industry, mostly as a finance and general management executive. He lives in Naples, FL and Annapolis MD. He has two grown children and four grandchildren, two of which have disorders of the corpus callosum. Don is on the boards of three financial companies and works hard at his woodworking hobby whenever he can.

Dave O’Brien, MBA

Dave O’Brien and his wife MaryLee are both long-time members of the NODCC. The proud parents of Connor (21), Kathryn (19), and Logan (14), they split their time living in Farragut, TN (suburb of Knoxville) and Lake Forest, CA (Orange County). Connor was diagnosed with complete Agenesis of the Corpus Callosum in utero. After considerable research, Dave and MaryLee discovered the NODCC in early 2012, attending their first conference in San Antonio that same year. Immediately, they recognized the value this organization provides, with researchers, education, and most importantly, community. Dave joined the NODCC Board of Directors in 2015 for 6 years, and is serving again starting in 2024.

Dave is the Sr. Director of Information Technology at CalOptima Health, a publicly funded health insurance entity for low income residents of Orange County, California. Dave has over 25 years of corporate technology leadership experience, with 15 years in healthcare. Originally from Staten Island, New York, Dave received his BS and MBA from Pace University. He has won numerous technology awards and holds multiple certifications in managed care and strategic technology operations. In his spare time Dave is a Scoutmaster for the BSA and enjoys as much golf as he can fit into his schedule.

Dax Norton, BS

Dax Norton was born and raised in Muncie, Indiana where he graduated from Ball State University with an education focused on History and Political Science. He completed his Bachelor of Science Degree in 1995. Dax’s professional life has focused on small business development, not-for-profit board development and management and community development. For the last 20 years, Dax’ has been a leader in the areas of government management and policy development and not-for-profit management and board development. He has worked for multiple not-for-profit boards and has focused on the development and financial strength of the organizations managed by those boards. He was appointed to an Indiana Governor’s cabinet position in 2013 to lead the leader of the Indiana Office of Community and Rural Affairs. The state agency focused on the provision of financial and strategic direction resources for Indiana’s rural communities. Following his time with the Indiana state government, Dax was the leader of the government of the fastest growing community in Indiana. He has a long history of policy development and lobby at the state level and years of experience with board membership and development, including board member positions with the United Way, Lions Club, Rotary Club, Witham Hospital Foundation, Indiana Chamber of Commerce, Indiana Association of Engineers, and the Boys and Girls Club. Dax is currently the Director of Economic Development, Grants/Funding and Municipal Board Strategy for a large consulting firm based out of Columbus, Ohio and is the principal owner of Crossroads Management Advisors Innovates (CMA Innovates). Dax is a long-time friend of fellow board member Kip Oren. He lives in Zionsville, Indiana, with his wife Kelly Norton and two daughters Trista and Charlee.

Mike Molettiere, MDiv

Mike Molettiere, MDiv is a pastor for Village Northwest Unlimited, an organization that serves adults with disabilities, and he loves every second of it. He has a Bachelor of Science degree in Psychology from Nebraska Wesleyan University and a Master of Divinity from Bethel Seminary. He lives in Ashton, IA with his wife, Lisa, and their 4 kids: Josiah, Levi, Stella, and Ethan. Josiah, who is in 8th grade, has complete ACC and is severely impacted with his development and functioning. Mike is dedicated to advocating for those who cannot advocate for themselves. He loves all sports, especially baseball, and eating at a really good hole in the wall Chinese restaurant.

Thomas Frey

Thomas Frey is the owner of a construction company in East Moriches, NY and a volunteer firefighter at the East Moriches Fire Department. He and his wife, Mary, have two children, Audrey and Lila who is an adolescent with complete ACC. Lila attends East Moriches Middle School, and is a very happy, social child but still struggles with many issues. The Frey family loves to travel and Lila gets very excited and starts planning the moment she hears about it. Lila also participates in t-ball, dance, school chorus, and loves to swim all year round.

Natalie Erb, CPA

Natalie Erb, CPA is a Certified Public Accountant and a financial executive with over 30 years of experience in diverse industries, including government, nonprofit, manufacturing and business services industries. She and her husband, David, live in Dallas, Texas with their oldest daughter, Fiona. Their youngest daughter, Amelia, passed away at the age of 5 in 2015. Amelia was considered medically fragile due to multiple conditions including complete agenesis of the corpus callosum, microcephaly and epilepsy. The Erb family started a foundation called Milly’s Wings, and raised $500,000 to build the first inclusive playground in Anderson County, Tennessee in memory of Amelia. Upon completion of the playground, the Erbs donated the remaining assets to the NODCC to assist in supporting the organization’s mission over the long term.

Ilana Davlin

Ilana Davlin is an adult with Agenesis of the Corpus Callosum from Virginia. She was diagnosed with ACC prior to birth but never let it stop her. She wears many hats and has accomplished many things like holding a full time job, living independently, and has a General Studies degree from a local university. Her past times include going to sporting events, concerts, and traveling.

It is her dream to help as many individuals with varying levels of Agenesis of the Corpus Callosum as she can. She would like to help them develop their voice just as she did when she attended her first conference. She has been involved in the Board of Directors since 2024 and is looking forward to helping the organization thrive.

Katherine Claxton, LCSW

Katherine Claxton, LCSW is a Licensed Clinical Social Worker with over 20 years of experience working in a healthcare setting. She received her bachelor’s degree in social work from Baylor University and her master’s degree in social work from the University of Texas at Austin. Katherine currently works in private practice part time, providing psychotherapy to older adults on site at their place of residence. Katherine serves on the Irvine Residents with Disabilities Advisory Board, which serves to advise the city on the needs of disabled residents. She is also on the mental health advisory committee for Sandy Feet Initiative, a surf program designed to meet the unique needs of the siblings of disabled children. Katherine and her husband Dean reside in Southern California with their two children: Charlotte (age 10) and Joshua (age 8). Joshua was diagnosed with hypoplasia of the corpus callosum when he was 19 months old after several delayed developmental milestones, prompting the family to become connected with the NODCC for resources and support. Katherine brings to the board her professional experience in the healthcare system, her passion for the needs of neurotypical siblings, and her unique perspective as a primary caregiver to someone with a disorder of the corpus callosum.

Warren S. Brown, PhD

Warren S. Brown, PhD is Professor of Psychology at the Graduate School of Psychology at Fuller Theological Seminary and founder of the Travis Research Institute. He received his PhD in Experimental Psychology from the University of Southern California. He is actively involved in neuropsychological research, particularly related to the consequences of agenesis of the corpus callosum for intellectual and social abilities. Among his more than 100 research publications are 50 articles on the neuropsychology of ACC. Dr. Brown also co-authored over 100 presentations at scientific meetings regarding his research on ACC.

Heather Bahorich

Heather Bahorich is a passionate talent leader with over 15 years of experience in Human Resources, talent management, and employee engagement. She brings a unique blend of professional expertise and personal dedication to her role on the NODCC Board.

Heather’s journey with disorders of the corpus callosum began when her daughter, Lillie, was diagnosed with isolated Complete ACC at 31 weeks pregnant. Despite initial uncertainties, Heather has actively shared Lillie’s journey through her social media platforms to provide hope and support to other families, connecting dozens of families to the NODCC over the past six years. Outside of her advocacy work, Heather enjoys spending time with her family, exploring hidden gems in her hometown of St. Louis, and traveling often to her favorite place, Walt Disney World.

Over the past year, Heather started volunteering with the NODCC Community Group and played a pivotal role in establishing the C.A.R.E. Squad pilot, which connects mothers of similarly aged children with DCC. This initiative has been a vital support network for many, and we are excited to see it expand more broadly this fall.

Kevin Hight

Treasurer

Kevin Hight lives in Columbia, Tennessee with his wife, Paige, and son Max (30 with complete ACC). Max volunteer coaches at Zion Christian Academy and is an avid sports fan of the Tennessee Vols and the Atlanta Braves. He also enjoys playing and watching the game of golf. Kevin and Paige also have a daughter, Gracen (28), who is married and works in the family business. Kevin is a graduate of Tennessee Technological University. He is a part owner of South East Carriers, Living Stone Freight Solutions, Heritage Automotive, Best Western Plus Lawrenceburg and Duke and Gobble Properties. Kevin, Paige, and their immediate families enjoy supporting the NODCC and attending the NODCC conferences.

Kip Oren, JD

Secretary

Kip Oren, Kip 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 administrator. Kip is an avid reader, a history buff whose primary interest relates to the Nixon Administration, and a diehard Miami Hurricanes fan.

Deona Kalala, JD

President

Deona Kalala is a Stay-At-Home Mom and a Senior Attorney at Alston & Bird, where she advises clients on antitrust and unfair competition law in the context of mergers and acquisitions and related compliance counseling. She has a decade of experience in big law. She also currently serves as a Council member for the American Bar Association Antitrust Law Section. Deona received her J.D. from Washington University School of Law. Prior to attending law school, Deona was a Client Executive for IBM. She earned her B.S. in Industrial Engineering and M.S. in Economics from the Georgia Institute of Technology. Deona lives in Atlanta with her husband and three children.

Barbara Fonseca

Managing Director

Barbara Fonseca serves as the Managing Director for the National Organization for Disorders of the Corpus Callosum (NODCC). Her current duties include all accounting and finances for the NODCC, assisting the Board of Directors, maintaining records, coordinating and exhibiting at medical conferences, managing the NODCC e-mail, overseeing vendor developments, assists as regional “first responder” for the family support groups, and administration. Prior to working with NODCC, Barbara worked in the sales industry. She also has her own company, handling financial accounts and payroll for other companies.

In the summer of 2001, Barbara’s family and friends sponsored a 3-day conference at the Yorba Linda Community Center. The conference addressed the issues of living with DCC, brought families and professionals together, and inspired a group of individuals to form the NODCC in 2003.

Barbara’s passion for the NODCC is very personal, as her own son, Nathan, was diagnosed with a corpus callosum disorder at eight months old. The struggle she faced in having a lack of resources and information inspired her to help create the NODCC and its community. Barbara understood the number of families who are diagnosed and have nowhere else to turn and finds joy in helping families come together for education and support.

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