News from the NODCC

Love and ACC

By Kelsie D


I have C-ACC and finding love hasn't been easy. When I find a person who I think is a good fit for me, I worry about getting a negative response when I express my feelings for them. But things changed when I met Brian at the most recent DCC conference in Frisco, TX. Brian's brother, Christopher, has ACC. During free time, Brian and his dad were at the Roughriders baseball game and we started a friendly conversation about the game and other things. At one point, I mentioned my birthday and that's when Brian got excited and said, "That's mine!" We were not only born on the same exact day, but we also learned that we had a few other things in common. We both like York peppermint patties and chocolate chip cookie dough blizzards from Dairy Queen. He knows American Sign Language and I am taking ASL courses in college. The funny thing is that Brian and I have been in each other's circles since the 2005 conference. We just didn't actually meet until Frisco.


After the conference, our families kept in touch. We live in South Carolina and Brian and his family live in Maryland, so seeing each other often is less doable than if we lived in the same area. He and I talk almost every night over the phone and we Zoom on Wednesday evenings. Through our chats, we've found that we and our families have even more things in common.


My parents and I spent this past New Year's holiday in New Jersey, clearing out my grandparents' house. My dad called me down to the basement to help him. When I got downstairs, he walked me down the driveway and I saw a car I thought I should recognize. Brian's dad got out of the driver's side and then I saw Brian get out of the passenger side. That's when the surprise hit and I said "OMG!" and gave him a hug. (My parents knew a week ahead and were in on the surprise!) That afternoon, we went to the American Dream Mall for some fun. As we walked, it was challenging to keep up with Brian who is taller than me. At one point, he reached down and grabbed my hand and that's when I knew our relationship was growing. One of the activities we did that afternoon was to ride the Dream Wheel ferris wheel. While we were up at the top, we took pictures of the skyline and decided we wanted to make ourselves official. Brian and I are really happy and our families are working on ideas for how we can visit more often.

Meet the NODCC’s Newest Board Member, Deona Kalala

By Miriam Bernard


Stay-at-home mom, attorney, engineer, wife, French student, networker, and Zumba enthusiast are all badges one could use to describe Atlanta native Deona Kalala, and as of January 2023, “Member of the NODCC Board of Directors” can be added to this impressive list. Let’s get to know Deona, the newest addition to our NODCC Board, and find out why our leaders felt she was such a great fit to help guide our organization in 2023 and beyond. 


Upon discovering a loved one had agenesis of the corpus callosum, Deona began learning everything she could about ACC and brain anatomy. Like so many just entering the “world of ACC” she consumed a great deal of information in a very short time, even to the point that doctors with whom she spoke would ask if she was in the medical field. She was quick to note, however, that because ACC and DCC involves such a spectrum, and because there is so much research out there, the inundation of information was overwhelming. This is where her discovery of the NODCC came about, and positively impacted the information flow in a way Deona and her husband could better digest and “funnel” the information to help their loved one in more meaningful ways.


Deona became aware of the NODCC in 2020 during the pandemic. She and her husband spoke with the NODCC’s Managing Director, Barb Fonseca, and they became involved remotely, due to the lack of meetings and conferences during the pandemic. When the NODCC yearly conference returned in 2022, Deona was able to attend, and immediately began growing meaningful connections with many other NODCC community members. She also attended an IRC5 presentation before the conference. 


Deona shared, “The IRC5 presentation was extremely helpful because there were all of the experts who were writing studies I had been reading. I could hear their cutting-edge research and ask the questions I thought were really relevant to my loved one and their situation. It helped me to be able to say ‘Okay,this is what you meant by that. I understand that term now.’ ” Through these events, Deona gleaned context she hadn’t found just sorting through facts online.


The journey from 2022 Conference attendee to board member was a quick one, and occurred because Deona expressed to how impressed she was with the conference and began sharing ideas and visions she had for the future of the NODCC organization. Her background as an attorney gives her a unique perspective to think about disorders of the corpus callosum from a legal and law-making standpoint, and the 2024 NODCC conference location of Washington D.C. puts Deona and the rest of the board in proximity to authorities in our nation’s capital who can create positive change and bring awareness to DCCs. She and the board are putting together big plans for what they hope to accomplish during their time in Washington D.C.


This brings us to the specific goals Deona has set out for herself as a board member: 


The first she spoke about is to take advantage of the conference’s upcoming location in Washington D.C., and to advocate to those in Congress and different health entities to build awareness about agenesis of the corpus callosum. Also, the insurance coverage for families with a member with an ACC varies widely from state-to-state, and the educational coverage through the IEP process varies from state-to-state. Deona wants to advocate for more equal access to services, and with her career in law, feels equipped to help make that happen. 


Her second goal stems from a personal experience she had at the 2022 NODCC conference. By happenstance, Deona met two other individuals with loved ones with an ACC, and they were in the exact same situation, taking in the firehose of information and sorting through it all. She’s remained friends with them to this day, and it has made her experience navigating ACC so much better. Therefore, another goal she has is to create more of those types of opportunities for people to make meaningful connections with one another and build a supportive community.


Deona stated her third intention as a board member beautifully. “My last goal would be to make sure that the organization reflects the diversity of folks that have ACC. I want to make sure we're getting the word out to diverse communities and that they're feeling welcome when they get here. I’d like to help make sure awareness about ACC and the wonderful resources of the NODCC are reaching as broad a population as possible.” What an excellent set of goals.


Deona’s experience thus far as a board member has been very positive, and just like being at the conference, she has been inspired by the hard work and dedication of everyone on the board. 


She states, “Everyone has been very thoughtful; very dedicated. I hope everyone who is a member of the NODCC knows what powerful advocates they have working behind the scenes for the families of people with and with ACC and for folks with ACC.”


Deona lives in Atlanta, Georgia with her husband and three children. She has a background in several impressive fields, including economics and engineering, but she has spent the past ten years as an attorney. In the last eight months, however, she put her law career on pause to take on the important role of stay-at-home mother. Deona shared, “I'm super excited about this new chapter of my life. My days have made a complete 180, from 12-hour work days in the office, to 24-hour work days at home.” When not chasing her kiddos, she enjoys taking Zumba classes, and even takes French lessons to grow closer with her French-speaking in-laws from the Congo. 


The NODCC would like to give a heartfelt welcome to Deona Kalala, and we have been so fortunate to learn more about her. We’re thrilled she has joined our board, and look forward to hearing all the excellent progress our organization is able to make thanks to her impressive skill set and unique perspective. Welcome to the team, Deona!

New Research Opportunity


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).


Parents will be asked to complete online questionnaires, interviewed by phone or skype about their family and child’s behavior, and most families will participate on multiple occasions (up to 5 times between 6 and 36 months of age). Some families will be invited to fly to the University of Minnesota for a direct behavioral assessment (all travel expenses paid). Nominal compensation will be provided for your time ($20 US for each long-distance assessment and $50 US for direct assessments).


Ultimately, this understanding can be used to create more effective intervention techniques and supports for individuals with ACC. If you are interested in participating and would like more information, please click on the following link: 

https://emotioncaltech.co1.qualtrics.com/jfe/form/SV_9Xr1cy47DnsOHiJ


To find out more about the study visit: www.accinfantstudy.com

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

February & March 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!


Expectant Parents and Parents of Newborns with a DCC

February 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 parents who have newborns or are currently pregnant with a baby with a disorder of the corpus callosum. 

Register Here


Grandparents of the NODCC

February 25, 2023

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

10:30 am CST / 11:30 pm EST

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

Register Here


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


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


Show Your Support for the NODCC Through Annual Membership

 

The NODCC was founded to help those who are caring for someone with a disorder of the corpus callosum (DCC) or an individual living with a DCC by providing information, resources, and facilitating connections between members.  Memberships help keep our operations and programs going – but most important, memberships ensure we can serve those living with a DCC in the future.


When you join or renew your dues for membership with the NODCC, you are investing in the future of the organization and ensuring we have the resources to help others for years to come.


Please consider becoming a member of the NODCC to pay it forward!


Click Here to Become a Member

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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