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.