News from the NODCC

NODCC Conference 2024 Wrap Up


By Miriam Bernard

Friends, smiles, hugs, photos, dancing, dinners, chatter and classes: our 2024 conference in Chicago, Illinois is officially in the books, and we’re thrilled that so many of our community members could join from around the nation and the globe! There is nothing like the camaraderie that occurs when families with common experiences and common goals come together to learn, grow, and steep in each other’s company, and this conference was such a special one! 


We had 476 registered attendees, 64% of those were first-time attendees. A special thank you to all the new families. We hope your experience was spectacular and that this was your first of many NODCC conferences!  


This year’s conference featured 50 unique sessions spanning all aspects of life with DCCs. We had 56 Adults with DCC attend sessions especially designed with them in mind. We’d like to thank  Jasmin Turner, Kaitlyn Nogales, Nate Le Febre, Kameron Rigg, Allie Nobles, Olivia Dods, Ella Bohlman, Wilder Hartwell & Bianna McNicol for their hard work and dedication to making the conference successful!


Attendees trickled in on Thursday and as our numbers grew, the buzz and excitement in the conference halls was palpable! Sessions began on Friday morning with a variety of specially-chosen topics, some research-based and some discussion-based. There were helpful booths, vendors, and researchers lining the halls, and live video interviews conducted to gather the stories of our attendees! The silent auction room was always bustling as attendees browsed the wide array of items up for auction. The evening wrapped up our banquet dinner, words from our emcee Zac Grantham, and welcomes from many of our NODCC board members and administrators. The evening concluded with a wonderful concert from The Alley Cats and many of our attendees wound up rockin’ out on the dance floor. Everyone had a great time! 


Saturday held many more informative sessions, an adults with DCC bowling trip, fantastic programs in our kid and teen centers, and the famous Saturday evening Dance party! The Silent Auction closed Saturday night, and over $11,000 was raised, which will be used to help fund our next conference in 2026. The highlight of the auction was the “Cleats for a Cause” worn by NFL player Dan Skipper, and donated to the NODCC for auction by the Jacobs family, whose son Lee has ACC. The cleats alone raised $3,500


Conference came to a close after lunch on Sunday, and it’s always bittersweet to watch families say their goodbyes and head back to their various corners of the world. Even though the conference is over, we hope the connections you made carry you in these coming months and years until we can all meet in person again in 2026!


Click HERE to view our Instagram reel highlighting a few of our favorite moments from the conference!

Welcome the Newest NODCC Board Members

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.

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.

* New NODCC Shirt Designs *


In case you missed it, we are excited to announce we have two new shirt designs available for purchase! These unique and stylish designs are perfect for showing your support and spreading awareness.


Both come in a variety of styles, including t-shirts, pullovers, and hoodies. Plus, you can choose from multiple colors and sizes to find the perfect fit for adults and children. They make great gifts for friends and family or a special treat for yourself.


Grab yours today by clicking the following links:



💙/🧠 Shirt: https://www.bonfire.com/disorders-of-the-corpus-callosum/


NODCC Superhighway Shirt: https://www.bonfire.com/nodcc-superhighway/

Fundraisers & Donations


Matching Gifts

​Don’t forget to check for matching funds from your employer. Many companies have matching gift programs that will equal or exceed employees’ charitable donation amounts.


Facebook Fundraisers

Fundraising for charities on Facebook is an easy way to help raise money for the NODCC. Simply click on the “Support Nonprofit” option when creating a new Facebook post and select the NODCC as the recipient. Birthdays, memorials, remembrances, and celebrations are great events to encourage giving from your family and friends.


Looking for other ways to support? The NODCC is searching for sponsors and partners who want to support our organization. We encourage all readers of the newsletter to send company names or potential company contact information to info@nodcc.org.


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Contact Us

(714) 747-0063 I info@nodcc.org I nodcc.org

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