The Missing Connection is What Connects Us: DCC Awareness Day 2021

It’s been a tough last year with the global pandemic, living through the challenges, and staying connected to loved ones and friends.

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 4,000 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 2021:

Photo Slideshows:

The NODCC is creating a slideshow with photos of individuals and families connected by this condition. In addition, a global slideshow with people from around the world will be produced by our international family organizations. To participate,

  • Download the “Connecting From” sign here
  • Take a photo of you and/or your family with the sign
  • Complete the permission form here
  • Email your photo to hello@nodcc.org
  • Complete form and send photo by Friday, June 25.

Note, you can also submit a photo that represents where you live, a bridge, matching shirts, etc.

Cortical Connections Conference:

Cortical Connections 2021 is a free, six-day event leading up to DCC Awareness Day. The conference is an internationally recognized scientific event created to discuss developmental malformations of the corpus callosum with both the scientific community and parents/families. The event is organized by the International Research Consortium for the Corpus Callosum and Cerebral Connectivity (IRC5) on June 27 – July 2. On the final day (July 2), family organizations from around the world will host special sessions and gatherings for parents, family members and adults living with DCC. The NODCC is proud to sponsor this conference to help connect researchers and families.

Sunday, June 27: Cortical Development/Callosum Malformations: Classifications, Causes, Prevalence
Monday, June 28: Genetics/Genetics & Fetal Development
Tuesday, June 29: Diagnostics & Diagnostics & Medical Issues
Wednesday, June 30: Brain Imaging and Connectivity/Brain Wiring & Compensation
Thursday, July 1: Neurocognitive Impacts & Interventions/Behavior Issues, Parenting & Interventions
Friday, July 2: DCC Awareness Day Celebration

Each day features a scientific panel followed by a parent focused “Living with DCC” session. The full schedule and descriptions are available online (note, all times listed in Greenwich Mean Time – GMT).  Click here for more information and for free registration!

Online Summer Auction:

We are launching our first, online auction this summer as a new fundraiser! The auction will run from July 5 – July 14 and will feature items generously donated by our Board of Directors, members and community. Watch for highlights of the items available for bidding and how you can support the NODCC through your donations. Our auction page will be shared soon!

Spread Awareness on Social Media

Along with this page, the NODCC will post informational and shareable graphics on Facebook and Instagram leading up to and on July 2. We want you to get involved by customizing and sharing your story to spread the word on disorders of the corpus callosum and how the condition affects lives. You can create your own content, share our posts, start a fundraiser or show your support through other creative ideas. Our theme, “the missing connection is what connects us” provides a great phrase to show others how our community has positively impacted your life or the connections you/your family have made through this diagnosis.

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.