DCC Awareness Day is July 2
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.

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

1.       Join in the #themiddlepart challenge and spark conversation on disorders of the corpus callosum. Read more about this below.

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.

Feel free to use videos and information on our social channels and website:

The Middle Part

This year, we have created a fun way to spark conversation on disorders of the corpus callosum on your social media channels. 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. Below are sample language and posts you can use to spread the word.

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.

Sample Post Text:
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.

Sample Posts:
Today I part my hair down the middle in honor of all the people like me who live with a diagnosis that doesn’t define me. #themiddlepart #LivingwithDCC
Today I part my hair down the middle in honor of all the people who live every day working twice as hard to do things that come naturally to others. #themiddlepart #DCCAwareness
Today I color my hair two different colors to represent the two sides of the brain. I am missing the main pathway, the corpus callosum, which helps get information between the two sides. Sometimes communicating is hard for me, but I just need a little extra time and patience.

#themiddlepart #LivingwithDCC
If you have questions or need additional information, please email Barb at info@nodcc.org . We look forward to seeing the photos, posts, and engagement next month!

The Summer application cycle for Olam's Piggybank has closed, and grant winners will be announced in July. If you are interested in applying in our next grant cycle it will start October 1, 2020.
Family Highlight: Meet the Grantham Family

Zac, Jen, Kaden, and Rhett live in Sherman, Texas. Their oldest child, Kaden, is 8 years old followed by Rhett, age 5, with agenesis of the corpus callosum.
After Rhett was born, Zac and Jen began noticing that Rhett was not meeting his developmental milestones and did not begin to walk until he was almost 3 years old. In April 2017, after being referred to an endocrinologist for possible growth hormone deficiency, an MRI revealed that Rhett was missing his corpus callosum. 
Some of the challenges Rhett has experienced include developmental delays with gross motor skills, fine motor skills, and speech. He is currently unable to dress himself independently, and he is still working on potty training. He has low muscle tone and walks with a slight limp. Rhett can also get easily frustrated and has a hard time calming down. 
Despite these early challenges, Rhett has made significant improvements. These days, he is starting to form full sentences. He is doing very well with his letters, numbers, shapes, and colors and is also working on writing his own name! The Granthams hope that Rhett will live a normal adult life. The Grantham family relies on their faith to give Rhett every opportunity to live the fullest possible life. In Zac’s words, “We have put 110% complete trust in God that he has a plan for Rhett. Our Lord and Savior has a purpose for him! ‘Many are the plans in the mind of a man, but it is the purpose of the Lord that will stand.’ Proverbs 19:21 ESV.”
We proudly welcome the Granthams to our NODCC family and hope to connect with their entire family at the next NODCC conference in June 2021!
Here are the latest opportunities to get involved with the NODCC community.

-Facebook Post Shared by Jasmin Turner

The California Institute of Technology and University of Minnesota are examining behavioral development in infants (6 to 36 months) with Agenesis or Dysgenesis of the Corpus Callosum (ACC). Ultimately, this understanding can be used to create more effective intervention techniques and supports for individuals with ACC. This is the first study examining behavioral development in infants with Agenesis / Dysgenesis of the Corpus Callosum (ACC) from birth into early childhood. We cannot begin to truly appreciate the potential for early intervention in ACC until we understand how these diagnoses are influencing behavior and neurological development during this critical period of time. Click HERE for more information.

Giving to the NODCC

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