News from the NODCC

Brain Awareness Week

By Miriam Bernard


Did you know? Brain Awareness Week is March 13-19, 2023! This annual campaign to garner public enthusiasm and awareness for the power of the brain is a great opportunity to better educate ourselves on all the incredible things the brain can do. It’s a great chance to learn more about how we can treat our brains well, especially in the context of DCCs. The Dana Foundation sponsors this yearly celebration and informational event, and we invite you to explore their wealth of resources, which are free to the public and very helpful in understanding the workings of the brain.


Not only does the Dana Foundation offer informational handouts about the brain for ALL ages including elementary, middle and high school ages, but there are also puzzle pack worksheets for all ages, that challenge the brain and test different aspects of brain function. Brain health matters, so take some time this week to challenge your brain through these resources, or through your favorite brain exercise.


Studies show that physical activity such as cardio and simple weight or resistance training exercises are CRUCIAL to brain development and health, so what you do for your body, you’re also doing for your brain! Dr. Sanjay Gupta, Neurosurgeon and CNN Chief Medical Correspondent states, “Physical exertion is the only thing we've scientifically documented to improve brain health and function, and it may even slow memory loss. It's the brain's only superfood. And it needn't be formal or require equipment. Walk more, take the stairs, and get up for light activity for two minutes every hour.”


Keep on the lookout on the NODCC Facebook page for daily posts about Brain Awareness, as well as resources on our website and the Dana Foundation website found here: Brain Awareness Handouts & Resources


'Inchstones' and Life as a Single Mom to a Son with a DCC

An Interview with Amy Connolly

By Miriam Bernard


“If you can’t find a milestone to celebrate, then celebrate an ‘inchstone’.” These were words of wisdom shared with me by Amy Connolly, NODCC community member, nurse, and single mother of three children, - Jesse, 13, Jake, 11, and Marcey, 9. Amy’s son, Jake, has Hypoplasia of the Corpus Callosum, and through his diagnosis she has become a wealth of insight and experience on having a child with a DCC. Read on to learn how the NODCC and its conferences have made an impact in Amy’s navigation of her child’s needs, as well as her advice on creating the best life possible for her children despite the busyness of life and work.

Click Here to Read More

Sharing Resources with the Professional Community


In February the NODCC was able to exhibit at two professional conferences, the International Neuropsychological Society and the Society for Maternal-Fetal Medicine. Barb was able to share our resources & offerings to support patients of the doctors in attendance and spread awareness about disorders of the corpus callosum.


Over the last few years, donations have supported participation at medical conferences in our efforts to raise awareness and acceptance continue to touch lives around the world. Please help us in donating to the NODCC's efforts toward our common goal - to help individuals living with a DCC, their parents, friends and communities. 


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Here are the latest opportunities to get involved with the NODCC community.

March & April Schedule


Connecting people affected by disorders of the corpus callosum is at the heart of what we do at the NODCC. We are excited to increase and improve our community sessions this year and offer presentations and discussions with experts.


Full session descriptions and registration links for each call are included below. Register for the upcoming calls and watch for details on more sessions coming soon!


Kids with DCC age 6-10

March 25, 2023

11:00 am PST / 12:00 pm MST/

1:00 pm CST / 2:00 pm EST

This is a meet and greet session for children with a disorder of the corpus callosum ages 6-10.

Register Here


Parents of Severe DCC

Children & Adults

March 25, 2023

1:00 pm PST / 2:00 pm MST/

3:00 pm CST / 4:00 pm EST

This is a meet and greet session for parents of children and adults with a severe disorder of the corpus callosum. 

Register Here


Adults with DCC

April 6,2023

5:00 pm PST / 6:00 pm MST/

7:00 pm CST / 8:00 pm EST

This is a meet and greet session for adults with a disorder of the corpus callosum. Jasmin will be leading the session on maintain friendships.

To receive registration information for this Zoom please email Jasmin at dccadults@nodcc.org


Dads of the NODCC

April 25, 2023

4:30 pm PST / 5:30 pm MST/

6:30 pm CST / 7:30 pm EST

This is a meet and greet session for dads who have a child with a disorder of the corpus callosum. 

Register Here


Grandparents of the NODCC

April 29, 2023

8:30 am PST / 9:30 am MST/

10:30 am CST / 11:30 am EST

This is a meet and greet session for grandparents who have a grandchild with a disorder of the corpus callosum. 

Register Here


Expectant Parents and Parents of Newborns with a DCC

April 29, 2023

11:00 am PST / 12:00 pm MST/

1:00 pm CST / 2:00 pm EST

This is a meet and greet session for parents who have newborns or are currently pregnant with a baby with a disorder of the corpus callosum.

Register Here


To suggest a topic for a virtual session, please contact our Community Committee at community@nodcc.org.


April Regional Gathering

April 22, 2023

2 - 4 pm

The venue will be on the

Washington University in St Louis,

School of Medicine Campus at

660 S. Euclid Ave.,

St Louis 63110. 


Any family, or individual, interested in attending can contact Lisa Mackenzie at 

corpuscallosumresearch@wustl.edu or 314-337-3380. 

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 info@nodcc.org.


Donate to keep our

community thriving!

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Contact Us

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

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