Celebrate 2020 DCC Awareness Day!

July 2 is our awareness day because it marks the midway point of the year – the point when the two parts of the year are connected — just like the corpus callosum bridges the two halves of the brain. It’s at this special moment in the year (July 2) that we celebrate World Disorders of the Corpus Callosum (DCC) Awareness Day.

The way we part our hair is sometimes just the way our hair falls, the latest style or how we woke up. The middle part may be the natural part in our hair, but it’s not always the one we go with. A part down the middle is great for some but challenging for others. That’s the same for people living with a disorder of the corpus callosum (DCC).

The corpus callosum is a band of nerve fibers that connects the two halves of the brain. Children and adults that are born without this connection (or the structure is not fully formed) must find other ways to communicate and get information from one side of the brain to the other. Individuals living with a disorder of the corpus callosum face communication, social, developmental, and behavioral challenges.

Join us in showing off a middle part in your hair to recognize the halfway point in the year and the challenges of living without the main connection in the brain. Share your photos using #themiddlepart on all your social media channels. Feel free to get creative with representations of the middle brain structure that presents a challenge for many living with the disorders. You can use spray color, hats, headbands, wigs, edited photos, graphics, etc. to highlight the middle line or talk about the corpus callosum.

We have 3 ways to get involved in the 2020 DCC Awareness Day during the month of July:

  1. Join in the #themiddlepart challenge and spark conversation on disorders of the corpus callosum.
  2. Think about how you can educate others in YOUR community. Share your personal stories and educational content from any of the NODCC channels. You could educate coworkers, neighbors, schools, church groups or friends. See how far your message can travel by using social media or email in lieu of in-person events. Use #dccawareness and #livingwithDCC in your posts.
  3. Create a fundraiser on Facebook, through your business or in another way to ask others to join you in helping make sure families have access to information on these disorders and can find support in other families and professionals.

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.