Research Studies Archive

Karson Caldwell

Karson Caldwell joined the NODCC Board after attending the 2024 Chicago Conference, where she was deeply inspired by the organization’s mission, the strength of the DCC community, and the dedication of fellow board members. Her involvement is driven by a desire to support her family in a meaningful way—particularly her nephew, Lee, who was diagnosed with disorders of the corpus callosum and other brain abnormalities at 20 weeks gestation. Now four years old, Lee’s journey has been challenging, but it is a powerful testament to his resilience and determination.

Karson holds a CPA license and earned both her bachelor’s degree and a Master of Science in Accounting. She brings a strong financial background and a passion for stewardship, transparency, and long-term sustainability to her role on the board.

Originally from Frisco, Texas, Karson now lives in Atlanta with her husband, Will, their daughter Eloise, and their Australian Shepherd, Rip. She is honored to support NODCC’s mission and help strengthen the resources and community available to families navigating a DCC diagnosis.

Bill Stout

Bill joined the NODCC Board in July 2025, bringing with him a long-standing personal connection to the organization and a deep commitment to giving back. Bill lives in Yardley, Pennsylvania, and enjoys exercising, yardwork, traveling, golfing, and spending time at the beach.

Bill’s journey with the NODCC began in 2004, when his oldest son was diagnosed with ACC prior to birth. Since that time, the NODCC has been a vital resource for his family. “We’ve always wanted to give back to the organization that has helped us so much over the last 21 years,” Bill shares. As the only organization dedicated specifically to supporting individuals and families impacted by disorders of the corpus callosum, the NODCC holds a special place in his heart.

What Bill enjoys most about serving on the board is learning about the critical work happening across research, advocacy, and fundraising, as well as connecting with fellow board members and hearing their personal stories. One of his most memorable experiences so far was attending his first board meeting in Atlanta, where he found the weekend both inspiring and energizing. “Meeting so many talented individuals who are so committed to improving the lives of families affected by DCC was incredibly motivating,” he says.

Looking ahead, Bill is especially excited about the potential to grow research efforts. He hopes the board can help significantly increase fundraising to expand both the amount and quality of research conducted each year, ultimately leading to better advocacy and outcomes for individuals and families impacted by disorders of the corpus callosum.

Although Bill’s formal Board service is new, he has had direct involvement with us dating back to 2010, when he helped with fundraising for a golf event in New Jersey after attending a conference. That was the first of many With his children now older and his schedule allowing more flexibility, Bill is excited to dedicate more time to volunteer leadership and advancing the NODCC’s mission.

It’s clear Bill is already an asset to our board, and today we’ll leave you with his thoughts on what Bill wishes he could share with every NODCC member: “If you feel that the NODCC has been a valuable resource please support us through either committing financially or committing time to volunteer in whatever areas interest you. This organization is still young and will be able to support so many more families in more meaningful ways if we can get more support from individuals, corporations and foundations.”

 Britteny Acoff

Hello NODCC members:

First and foremost, I would like to give thanks to the Board and the NODCC community for this nomination.

My name is Britteny Acoff. I was born in Savannah, Georgia, on September 4, 1986, the second child of Larry and Alberta Acoff (my older sister is Netarasha). The doctors informed my parents that I had been diagnosed with Complete Agenesis of the Corpus Callosum in utero. I was in the NICU from September to December. At the time of my discharge, my weight was 3 lbs., and my parents were very happy and proud to take me home for the holidays. The nurses had dressed me in Cabbage Patch doll clothes, and all the nurses and staff clapped as we departed.

While working toward my high school degree, I was allowed extra time to complete my class assignments when needed. During most of my 12 years of education, I went through physical, occupational, and speech therapy. I accomplished my goal of graduating from high school on time with my class—a proud day for me in May of 2005. It was also a great day for my family. Nine years later, I graduated from college with an Associate’s degree in Applied Science and Medical Records in December 2014.

My mother found the NODCC program online in 2009, and we were able to attend our first conference in July 2012 in San Antonio, Texas.

I am currently living in Niagara Falls, New York, and working with the family business.

Thank you again to the Board for this nomination to become an Ambassador for the NODCC.

Chris Larson

Hi, I’m Chris! I’m 31 and was diagnosed with complete ACC when I was three years old. Doctors once thought I might never be able to walk or talk, but I’ve worked really hard and I’m proud of how far I’ve come.

After high school, I attended the 18-21 year-old Functional/Vocational Program at my local high school. 

Outside of work, I enjoy being part of the Special Olympics, especially bowling and basketball. I also love to socialize, watch sports, and cheer for my favorite teams from Wisconsin and Notre Dame!

I attended my first NODCC Conference in 2024, where I made lots of new friends (including my good friend Connor), and I’m already looking forward to making even more friends at the next one.

ACC has been one of the several obstacles I have had to overcome since birth. I’m grateful for how far I’ve come and hope to continue to bring awareness to corpus callosum disorders – especially at future NODCC conferences – to shed light on how difficult life can be with this, but also show that any obstacle can be overcome with optimism, positivity, and hard work.

Lauri White

Lauri White was born and raised in Las Vegas, Nevada. She has been married for 31 years and has 2 children, Chad and Taylor. She taught elementary school for nearly 10 years, learning how to teach many children with different disabilities. One of those children was her son, Chad, who has Complete ACC. During that school year she learned many techniques to get Chad to comprehend information and retrieve what he learned. Once Chad went to middle school, Lauri quit teaching so she could tutor Chad after school each day, which she continued to do through Chad’s college years. Watching him get his college diploma was quite a special day. In her free time, Lauri spends time with family and friends, watching Oklahoma Football and Softball, running her own Fantasy Football League, and traveling.

Doreen Donohue DNP, RN

Doreen Donohue is a Registered Nurse with over 40 years of experience. She has held nursing operations positions in a variety of hospital settings. She is currently the Director, Office of Quality and Patient Safety for Joint Commission, a global driver of quality improvement and patient safety in health care. In her role she and her team are responsible for evaluating patient safety events globally. She received her Doctorate of Nursing Practice in Executive Leadership from the University of Alabama in Birmingham.

Doreen is the aunt to seven nieces and nephews. The youngest, Deegan (13) was diagnosed
with Hypoplasia of the Corpus Callosum at the age of 1 1⁄2. It is in her search for information that Doreen first became aware of NODCC. Her involvement was peripheral until 2025 when a call for board members was announced. It is her hope to assist the organization in disseminating advances within the medical community related to DCC.

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.