By Kathryn Schilmoeller PhD and Lynn Paul PhD, illustrated by Cindy Reisenauer ($20.00 each) Meet Dexter! A delightful red-haired boy who has ACC. In this short story, Dexter explains what ACC is and tells the reader how having ACC impacts his life
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
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.
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.
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
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.
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.
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.
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.
Kip Oren, JD
Deona Kalala, JD
President
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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