News from the NODCC

“What Conference Means to Me”

An Interview with Zac Grantham – 2024 Conference Emcee and Parent to 8-Year-Old Rhett Grantham, ACC

By Miriam Bernard

“Now y’all are stuck with us Granthams” is one of the first sentiments North Texan dad, Zac Grantham, shared when asked about finding the NODCC and attending his first conference. Like so many families who find the NODCC, once you're plugged in, unplugging isn’t something most people wish to do. Zac met with us recently to share his warm feelings regarding the NODCC conference in anticipation of this year’s gathering in Chicago, Illinois.

The Grantham family’s first NODCC conference was the 2022 conference in Frisco, Texas. Their son, Rhett, had been diagnosed with ACC and they felt the need to experience community with others going through the same.  “We didn’t really know what to expect,” Zac shared, “but we were familiar with the area so we went down there and met up with a lot of families… It was so cool because you connect with all these families across the country and the world who are dealing with the same thing that you’re going through, and you immediately have this bond with them… It felt like we knew everybody immediately.”

Zac recalls how before the conference, he and his wife had never heard of certain DCC therapies such as equine therapy, and now their eight-year-old can ride a horse – all because of information they received at conference. It’s not just the information though. Zac shared how special it was getting to sit in on a Q&A panel with DCC young people. He stated, “When you have a young kid still in grade school that has this condition, then you talk to these young folks, it gives you hope. I looked on that stage to these young people and thought ‘You all are absolutely brave, and you are amazing.’ So this inspired my wife and I seeing what they’ve accomplished in their lives, and thinking of our eight year old. This encourages us with what he’ll be able to do when he gets older.”

Zac also explained about the unique and valuable exchange of information conference fosters. He recalls getting peppered with questions by a young couple who’d recently discovered their child had a DCC in-utero. They shared everything they could to help this family get their feet under them, because they’d lived everything that family was about to go through. Then, within the same weekend, the Granthams themselves would have a conversation with an older couple who were parents of an adult with DCC, and they’d receive information and encouragement they needed because that couple had lived through parts of the journey they hadn’t yet. This hierarchy of information dissemination is one of the most wonderful parts of conference, Zac feels.

When asked what he’d like to share with the larger NODCC community about conference, Zac smiles and says, “Knowing that there are other people fighting the fight with you is so encouraging. You’ve gotta get there. Do it one time. My wife and I aren’t crazy about getting on an airplane, but we’re gonna do it and have a great time in Chicago this summer… We have our church family, our family, our friends, and they understand to a certain degree,  but then we have our NODCC family and they truly understand – because they’ve lived it.”

If you attend conference this June, keep an eye out for Zac, as he’ll be emceeing some of the events in Chicago! To sign up to be one of this year’s NODCC Conference attendees, click HERE!

We know that travel and attending conferences are a financial investment for individuals and families. We have compiled funding opportunities that may help offset the costs of attending the NODCC Conference.

Scholarship Funds for Conference Registration

The NODCC has allocated two scholarship funds to help with cost of conference registration. The first fund is for adults living with a disorder of the corpus callosum and the other is for families in Illinois and surrounding states. The scholarship will help cover the cost of one conference registration ($300). Preference will be given to applicants who have never attended conference (or if significant time has passed since attendance) and financial need.

To apply, complete the applications below:

- Adults with Disorder of the Corpus Callosum Application

- Local Families (and surrounding states) Application

Click HERE for other funding opportunities and sources.

Monthly Feature: Researcher’s Corner

Welcome back to the collaboration with the NODCC and its key researchers from around the globe. Each month we will introduce you to important research being conducted on the topic of DCCs through the specific research of friends of the NODCC. This month’s featured researcher is Dr. Elliott Sherr, MD PhD, Professor of Neurology and Pediatrics at the University of California, San Francisco,  and founding and director of the Brain Development Research Program.

April 2024 Featured Researcher: Dr. Elliott Sherr, MD, PhD

Compiled and Edited by Miriam Bernard

Dr. Elliott Sherr is the founder and Principal Investigator of the Brain Development Research Program. He is a Child Neurologist, and is invested in explaining the genetics of neurodevelopmental disorders such as autism and epilepsy, with a particular focus in structural brain malformations such as agenesis of the corpus callosum (ACC). In addition, Dr. Sherr co-directs the neurometabolic program and clinic at UCSF, and is an active attending physician in the division of child neurology. Dr. Sherr is involved with both the NODCC and the research international collaborative, IRC5 (International Research Consortium for the Corpus Callosum and Cerebral Connectivity). He has been on the NODCC board and scientific advisory board for 10+ years.

Click the button below to read more about Dr. Sherr:

Click Here

This graduation season, the NODCC wants to highlight and celebrate the many accomplishments of our DCC students of all ages - whether that be a diploma, a completion of a program, moving on to a job, or attending a new school!

Click the button below to share with us the exciting new horizons you or your family member will be traversing in this next season, and we may highlight your submission in our upcoming NODCC newsletter and social media posts!

Click Here

Olam's Piggybank Application Opens on May 1

Click HERE for information about grant criteria, eligible items, and more.

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

Donate to keep our community thriving!


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