The Missing Connection is What Connects Us: DCC Awareness Day 2023
As the largest pathway of nerve fibers connecting the left and right halves of the brain, the corpus callosum is the bridge in our brains responsible for communication and many other tasks. When that connection is missing or not fully formed, the result is a disorder of the corpus callosum (DCC) and challenges that can include communication, processing, social, mental and behavioral issues.
Approximately, 1 in every 2,053 births result in these rare conditions. There is no cure or reversing DCC. Just as the brain must find other pathways for communication, people living with the condition must learn to cope and live with the challenges.
The National Organization for Disorders of the Corpus Callosum (NODCC) provides resources, information, and support to families while working to raise understanding and acceptance. We are a community that comes together to educate, support and connect parents, relatives, caregivers, medical professionals, educators, and those living with the condition.
On July 2, we celebrate DCC Awareness Day around the world. It’s the day that marks the midway point of the year – the point when the two parts of the year are connected.
On this day, we come together to shine a light on this misunderstood and relatively unknown disorder.
Here’s how you can get involved in the DCC Awareness Day activities in 2023:
- Similar to our 2016 celebration, we are asking everyone to take a photo or video on a bridge and share it on your social media pages and on the NODCC social posts. You can also change your profile picture on Facebook to the image. In your photo on a bridge, you can hold up a photo of your loved one with a DCC (or have them with you), hold up a NODCC awareness ribbon, show the logo or any other creative idea you can think of!
- Share your DCC story on social channels.
- Create a short 1-2-minute video introducing others to living with a DCC.
- Ask your local library to host summer story time with reading of ACC and Me
- Host a fundraiser and awareness day at a local restaurant.
- Host lemonade stand or other homemade fundraiser .
- Share your story or ideas with local parenting magazines, newspapers, and websites (you can find the editorial contact within the magazine or online)
- Living with a disorder that most people haven’t heard of
- Invisible disabilities
- Celebrating holidays with special needs kids
- Special needs summer fun
- Helping others understand a brain disorder
- Like, comment on, and share our posts on Facebook (www.facebook.com/NODCC/) and Instagram (www.instagram.com/livingwithdcc/)
- Direct people to our DCC Awareness Day page: https://nodcc.org/dcc-awareness-day/
- Start a Facebook fundraiser on July 2 to raise awareness
- Change your profile picture to one of the following graphics: view here
- Share a photo of you and your crew sporting NODCC shirts
Tough body: the corpus callosum
Imagine being told your child is missing something that you didn’t even know existed. This is what many families experience when they first learn that their child is missing the largest and most important pathway (of nerve fibers) in the brain. Latin for “tough body,” the corpus callosum is the main connector that allows for direct communication between the left and right halves (hemispheres) of the brain.
As we coordinate movements or think about complex information, the hemispheres of our brain are communicating with each other. In humans, each hemisphere specializes in doing specific skills and tasks. For most people, the left hemisphere plays a larger role in processing language and logic tasks of math and reasoning and the right hemisphere is more involved in creative tasks and emotions. The hemispheres make the best use of their expertise by working together to generate the activities, thoughts, and emotions we experience every day.
How do the halves communicate and work together? They use the corpus callosum! The corpus callosum is like a superhighway for moving information between the two sides of the brain — without it, information gets stuck in one hemisphere or the brain must use another pathway to send information to the other side. That is what happens in a disorder of the corpus callosum – the superhighway isn’t working so the brain has to use ‘side streets’ to get information from side to side.
Understanding the disorders
Disorders of the corpus callosum are not illnesses or diseases. They are abnormalities of brain structure and can only be diagnosed by a brain scan (such as a MRI, CT, or ultrasound). When the corpus callosum does not develop in a child (agenesis) or develops abnormally (dysgenesis), it cannot be repaired or replaced – but doctors are researching ways to improve the lives of those affected by the disorders. Current research suggests that as many as one person in 4,000 is born with agenesis or dysgenesis of the corpus callosum.
Some people with these conditions require medical intervention due to seizures or other medical conditions, but many others do not require medical treatment. However, many children with a corpus callosum disorder will need treatment to help overcome or cope with developmental delays, and others will need assistance into adulthood to help with difficulties in social and/or behavioral functioning.
For more information on the characteristics of individuals with the disorders, click here.
Individuals with disorders of the corpus callosum may face a variety of challenges that cover a broad range of disability. Since it is a brain disorder, the disabilities are not always visible to the eye. A child with a disorder of the corpus callosum may look typical, but socially or developmentally be far behind their actual age. Educating people about these diagnoses can help them become more accepting and compassionate about these invisible disabilities and can support families as they help their children navigate successfully through life. This is why we need awareness campaigns.
Studying the brain’s wiring
The brain is considered to be the most complex organ – actually, the most complex thing in the universe. Imagine being a researcher studying something so complex!
Since the effects of a disorder of the corpus callosum cannot be reversed or cured, researchers are working to understand how brain functioning changes when the connection is missing or altered. Ultimately, the goal of research is to develop effective interventions and strategies that will help people with these disorders function independently and have meaningful roles in society.
The National Organization for Disorders of the Corpus Callosum (NODCC) is the leading nonprofit organization dedicated to educating, enhancing lives and promoting understanding of these disorders. There have been significant strides in understanding and making life productive for those living with and caring for an individual with a disorder of the corpus callosum, but we need much more research to uncover more treatment and strategy options for improving lives and uncovering causes of the conditions.
Let’s make the corpus callosum a household name
“If you don’t know what the corpus callosum is, then it’s probably because you have one!”
World DCC Awareness Day reminds us to educate others about the corpus callosum and its important role in the daily functioning of our brains, as well as about the challenges faced by people who do not have a fully functioning corpus callosum. Understanding encourages compassion and helpfulness for people dealing with these disorders. It also helps shine a light on the need for more research and funding to benefit many individuals and families.
On this day, we recognize the many people whose lives are affected and challenged by disorders of the corpus callosum. We invite people to share stories, images and videos to be part of starting the conversation on disorders that many people do not understand. It’s a great day to spread awareness about the important role the corpus callosum plays within our brains, as well as the challenges people face if they do not have a fully functioning corpus callosum (or maybe don’t have one at all).
DCC Awareness Day was established in 2015 by the NODCC, AusDoCC and Corpal.