News from the NODCC

Holiday Memories and Traditions


In our November E-Blast, we asked our NODCC community about their holiday traditions and memories, and we received some beautiful responses, especially in relation to their family members with a DCC. Read below to feel all the warm-fuzzies from your own NODCC family members. If you’d like to see your own name in a future newsletter, reply to our short survey about your New Years plans or Valentine’s Day questions, and we might feature your answer, too!


What is your favorite holiday memory?

“On Christmas Eve we sat at a candlelight service. It was a beautiful, quiet moment as we softly sang Silent Night. From her seat, our daughter loudly and proudly sang out, "row, row, row boat!!" It was a moment of pure joy and innocence. I will cherish that memory forever.”            – Stephanie


“We always love to go look at Christmas lights. Rhett (DCC) will point at every single lit up house and say, "look at that house!"-- Zac


“There are so many but one in particular is a picture with Santa when he was little. He is all smiles and has the best grin on his face. I also love how he is now starting to figure out the holidays, who Santa is, what presents are. He gets so excited with each one and wants to instantly play with them. I love seeing his joy.” -- Bridget


What have you learned from your child(ren)?

“Being with family is the most important way to celebrate.” – Orly


“Love knows no boundaries!” – Denise


“Holidays are so important and to keep the magic alive by being involved making new memories and incorporating old traditions into new traditions keeping the Spirit of the holidays alive.” – Jeffrey


“Traditions are nice and have great value, but sticking to and expecting that traditions will be carried out perfectly rob you of the joy. Sometimes we need to learn to be flexible and understand that her needs may affect how we do things, and that is okay!” – Stephanie

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“How awesome it is to watch them enjoy Christmas morning.” – Thomas


“To take things as they come and not get stressed about getting things done.” – Mike


What brings you the most joy during the holidays?

“Watching my daughter enjoy the little things about the holidays, and introducing to her to my love of Christmas villages, and the way her eyes light up and she smiles when she sees all of the lights.” – Kimberley


“Being able to share the true meaning of Christmas and celebrate our Lord & Savior, Jesus, being born is a real joy for our family.” – Zac


“Being with family and seeing the joy on my little boy’s face when he sees something exciting. I also love picking out our Christmas tree (real tree family) and pulling out all of our special ornaments we collect on our travels.” – Bridget


“We always spend time with extended family which means ROAD TRIPS! During these hours of shared space, we have the chance to reconnect, decompress and sit in silence together. This is a time we have all learned to look forward to each year! Sometimes we add in a bonus stop for some additional bonding time.” – Layton


“Seeing people smile.”-- Jeffrey


What are some of you holiday traditions? How do you include your child with DCC in your traditions?

“This will be the first year that Nora will participate with us and my MIL in making Christmas cookies. She loves textures and tasting things, this will be a messy, wonderful experience for us all.” – Kimberley


“Lighting Hanukkah candles (and quickly moving them someplace where a Olam cannot blow them out). Playing with an electric top that gets Olam cackling with laughter as it travels across the floor.” – Orly


“Singing fruits of the Spirit song and have Allison participate.” -Lynn


“[Our son is] only 22 months but we include him in everything! Just seeing him defeat his every day challenges is a gift in itself.” – Denise


“We always take a trip into NYC to see all the decorations. This year we saw the Nutcracker at Lincoln Center. We always do a lot of activities during the holidays and everyone is included all the time!” – Thomas


“Christmas Eve Grey and I always set out milk and cookies for Santa…It’s all about our sweet little guy and his pace. This year I want to look at some walk through [lights] displays. I think Grey will enjoy walking through them more and moving around as opposed to just sitting in his seat. We are always looking for ways to adjust and accommodate the needs of Grey.” – Bridget


“Our daughter Kelsie (25, c-acc) is a vocalist with our church's praise band… A newer Advent tradition is our Carols & Candles evening outdoor worship service for which the band leads the singing of carols in between readings of scripture. It's a casual service open to the community and evokes the old tradition of gathering to sing Christmas carols for neighbors and friends. It is a fun and spiritual event for all of us.” – Robin

Thank You for Being Part of our Community and Contributing to the Holiday Campaign

"December is the month of giving: giving gifts, giving time, and giving back. This year, and every year, we are grateful for this community, the connections made (virtually or in-person), and the support given by those who understand what you are going through.  

 

During this month of giving, please consider donating to the NODCC. Funds raised during the holiday and end-of-year campaign go directly towards our programs and operational costs. These include website maintenance, printed resources for medical conferences, and more.

 

Thank you, thank you, thank you to everyone who donated, shared, or created a fundraiser for Giving Tuesday! We raised over $7,000 in a week and kicked off the holiday giving season.

 

For donations to count in the 2022 calendar year, please ensure the contributions are received by December 31.

 

Click here to make an online donation. If you would like to mail a check, please make checks payable to NODCC and send them to PMB 363, 18032-C Lemon Dr, Yorba Linda, CA 92886."

New Research Opportunity


Dr Linda Richards and her Brain Development and Disorders Laboratory are seeking individuals with a corpus callosum disorder, of all ages and abilities, who are interested in participating in our research program. 


All participants will be required to complete an onboarding process where we will obtain all relevant medical and personal information. These studies are part of ongoing collaborations with other researchers such as Drs Paul, Brown and Sherr. We will not repeat the work of other laboratories but aim to build on their studies and provide new directions for research. Therefore, with the participants permission, we will obtain any previous research data which may have been completed with other NODCC affiliated research groups. 


Depending on which studies a participant has already been involved in, and their suitability, they may be invited to complete a variety of research tasks such as; provide a saliva sample for DNA testing, online puzzles or surveys, MRI scans, and cognitive testing.  For their involvement adolescent and adult CCD participants will receive ~ $15.00 per hour (min payment of 1 hour). 


If you are interested in learning more about opportunities to participate in our research program, please contact Lisa Mackenzie at corpuscallosumresearch@wustl.edu or on (314) 337 3380. You can also find more information about our lab and our work via our website at https://sites.wustl.edu/richardslab/.

We Want to Hear From You! 

Love with a DCC:

We want to know your or your family members' stories of finding love with a DCC. How has it presented challenges? Has it made romance easier, more difficult, extra special or unique? Share your sappiest and most warm, fuzzy love stories with us, and we may reach out to share your story in our February eBlast, just in time for Valentine's Day! Please email us at communication@nodcc.org


From all of us at the NODCC, we wish you and your family a happy and safe Holiday season.


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

Connecting our DCC Community through Virtual Sessions

January 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!


Dads of the NODCC

January 3, 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


Moms of the NODCC

January 5, 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 moms who have a child 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


If you would like to suggest a topic for a virtual session, please contact our Community Committee at community@nodcc.org.

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 and resources, as well as facilitating connections and resource sharing between members. Much of our work in connecting people and reassuring recently diagnosed families requires time and a personal touch. We know that speaking to someone or receiving an email response to your questions is important. 

 

Your NODCC membership helps fund resources as well as our part-time director who can connect individuals and families with the information they need as well as other families within our community. More importantly, your membership represents your commitment to helping the NODCC continue to grow as the leading organization supporting DCC.

 

The online membership form can be accessed at: https://nodcc.org/get-involved/become_member/

 

We hope that you will show your support for the NODCC by becoming a member of the or renewing your membership today.


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.


Amazon Smile

Did you know that your regular Amazon purchases can help raise money for the NODCC? It's a donation opportunity provided through AmazonSmile. Help the NODCC and encourage your friends and family to list the NODCC as the preferred charity on your Amazon accounts. Start contributing today and add the NODCC to your AmazonSmile. Your quick click here makes a big difference!


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!

DONATE



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