SHARE:  

News from the NODCC

Celebrating 20 Years of the NODCC – 2003-2023

“Here I Am. How Can I Help?”

The Power of Extended Family Members Getting Involved An Interview with Jen Little



By Miriam Bernard

 

Longtime NODCC Community Member Jen Little has worn a great many hats during her 18 years with the organization, including chair of the communication committee, president of the board, conference host committee member, communications consultant, emcee, and now a member of the nominating committee. But the “hat” that began it all, was that of being Aunt to her late niece, Abby, who had Agenesis of the Corpus Callosum.

 

Jen and her family became aware of Abby’s ACC in 2003 when she was one year old. In 2005, Jen, her sister, Jessica, and Abby made their way together to Greenville, South Carolina for that year’s NODCC conference. Up to that point, they didn’t know a single person within this community, but as so many others who have been to conference can attest, that instantly changed upon arrival. Before long, Jessica began connecting with other DCC families in her home state of Texas, and the family began to experience all the connections and resources the NODCC offers.

 

Jen found out there would be a public lunch meeting at the conference, and upon attending, Jen felt led to simply ask, “Here I am. How can I help?” At first, since she wasn’t an immediate family member of a person with a DCC, the board members were taken aback. But when they heard about Jen’s background in public relations, and realized an extended family member was offering their services, they asked if she’d be a part of the communications committee, and the rest was history.

 

When we asked Jen why she was the one to get very involved rather than Abby’s mother, her answer was clear. “It’s hard enough to be a parent of a special needs child. We know it’s hard on those parents to be the volunteers sometimes, but it could be the people in their networks, their family members, and their friends.” Jen shared. She is an advocate for extended family and friends stepping up to help within an organization where parents are often overwhelmed with keeping their family’s daily lives running smoothly. Sometimes it’s aunts, uncles, grandparents, and family friends who possess the bandwidth to step in and work with an important organization like the NODCC, as an act of love to their extended family member. That is exactly what Jen did, and our organization is the better for it.

 

She has subsequently held all the afore-mentioned posts, and has even attended conferences during years when her sister and niece were unavailable to join. When you dive deep into meaningful work on behalf of a loved one, you find before long your loved one isn’t the only reason for your involvement, for you grow to have MANY individuals you love and care for, and that is exactly how Jen has approached her work with the NODCC over the years.

 

In our next 20 years, Jen would love to see the NODCC grow technologically, and also garner a stronger reach in finding DCC families who don’t know resources are there for them. As the aunt of a someone who lived with ACC, she wants to encourage extended family members to step up and get involved as she has, because our community is our lifeblood. Jen states, “People with ideas, connections, or a passion to give back can help us think about what we need to do, whether it’s technology resources, an updated website, or funding. We’ve all heard the phrase ‘It takes a village’ and that phrase really is true. Now that I’m on the nominating committee, a message I’d like to share is there are so many types of people who can get involved.” Maybe this year, that person is YOU!

 

Jen Little, a resident of Dallas, Texas, is mother to a 15-year-old son. She works for a global public relations agency, and when not busy with the NODCC, enjoys traveling, reading, going to sporting events, including college football (Go Longhorns!). We are so grateful for Jen’s willingness to share with us about all the NODCC means to her.

 

This article is part of a series called “Celebrating 20 Years of the NODCC – 2003-2023” – keep your eyes open during the remainder of this year for additional anniversary pieces looking back on the history and legacy of the NODCC, or to read prior installments of this series, visit our blog here.

September Community Calls

register today!



Do you ever find yourself wishing to interact with more people who understand DCCs and the DCC community? Well, one of the NODCC’s main goals is CONNECTING people across the nation and world who want to interact with those who grasp the uniqueness of the DCC experience. This is why in 2023 we’ve created even more opportunities for linking up with other DCC families via Zoom.

 

If you’ve never joined one of our community calls, we have meetings for Adults with a DCC, Fathers, Mothers, Grandparents, and even Expectant Parents/Parents of Newborns with a DCC; and we think you’ll immediately feel the acceptance and warmth of our community as soon as you attend. Make this month the month you link up and experience the deep support of our incredible community!

 

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!


Fathers of the NODCC

September 21, 2023

5:00 pm PST / 6:00 pm MST/ 7:00 pm CST / 8:00 pm EST

Presenter/Facilitator: Ilunga Kalala, Member

Attention fathers: Are you navigating the unique challenges of parenting a child with agenesis of corpus callosum (ACC)? We recognize the importance of creating a space where fathers can connect, share experiences, and support one another. Join our recurring monthly support call tailored specifically for fathers of children with ACC.


From practical strategies to emotional well-being, we'll explore various facets of parenting a child with ACC while providing a supportive and understanding environment.

Register Here


Mothers of the NODCC

September 26

5:00 pm PST / 6:00 pm MST/ 7:00 pm CST / 8:00 pm EST

Presenter/Facilitator: Deona Kalala, NODCC Board Member 2023-2026

Are you a mother navigating the unique journey of raising a child with agenesis of corpus callosum (ACC)? We understand the challenges you face and the importance of connecting with others who share similar experiences. Join our recurring monthly support call, a safe and supportive space designed exclusively for mothers like you.


Our recurring monthly support call aims to provide you with a dedicated space to connect, share, and learn from one another's experiences. From interventions and therapies to coping strategies and self-care, we'll explore the practical aspects of raising a child with ACC while also addressing the emotional and mental well-being of mothers.

Register Here


Grandparents of the NODCC

September 30

9:00 am PST / 10:00 am MST/ 11:00 am CST / 12:00 pm EST

Presenter/Facilitator: Kathe Gee, NODCC Board Member 2020-2023

Grandparents play an invaluable role in the lives of individuals with agenesis of the corpus callosum (ACC). This webinar is designed to provide grandparents with a deeper understanding of ACC, offer insights into supporting their grandchildren, and foster a sense of community among fellow grandparents facing similar experiences.

Register Here


Expectant Parents and Parents of Newborns with a DCC

September 30

11:00 am PST / 12:00 pm MST/ 1:00 pm CST / 2:00 pm EST

Presenter/Facilitator: Heather Will, Admin of ACC Babies Support Groups

Are you a new or expecting parent embarking on the unique journey of raising a child with agenesis of the corpus callosum (ACC)? We understand that this path comes with its own set of questions, concerns, and joys. Join our recurring monthly support call tailored specifically for parents like you, where you'll find understanding, information, and a supportive community.


Each month, we'll address topics that matter most to you, providing guidance on understanding ACC, early intervention, creating a supportive environment, self-care, advocacy, and more. You'll have the chance to engage in open discussions, ask questions, and connect with fellow parents who are on a similar path.

Register Here

Australian Disorders of the Corpus Callosum (AusDoCC) is hosting an event November 24-27 at University College, Melbourne, VIC.

Find out more information about the event by clicking here.

Have a topic you would like to discuss in a virtual community gathering? Please submit topic proposals by clicking the button below:

Submit Topics Here

New Membership Stickers!

become a member today


Introducing our brand new membership stickers, exclusively for NODCC members! Don't miss out on this perk – these stickers won't be available for separate purchase on our online store. Join us today via the link below to get your hands on this special sticker set.


By becoming a member, you're not only getting these cool stickers -- you're also investing in our organization's future and ensuring we have the resources to help others for years to come.


Current members, keep an eye on your mailbox – your sticker sets are on the way!

   Join Here   

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!

Donate

See more upcoming events

Volunteer opportunities

Contact Us

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

Click on the icons to follow us!
Facebook  Twitter  Youtube