Dr. Lynn Paul, co-founder of the NODCC and Doctor of Clinical Psychology, is one of the few individuals who was present to witness the idea of the NODCC as just a seed, and has had the privilege of watching it blossom into something she deems “profoundly rewarding”. Enjoy this look back, as we learn from Dr. Paul how the NODCC came about and the groundbreaking research that has acted as fuel to bring the NODCC to where we are today.
Although this year we celebrate 20 official years, Dr. Paul’s connection to ACC research actually began 30 years ago, in 1993, when she began working as a graduate student with Warren S. Brown Ph.D, who was researching behavioral issues in individuals with ACC. Dr. Paul had a hand in growing the study from two participants to 14 in her time as a Ph.D student. At the time, nearly no data existed on the topic and the growth she witnessed during that period was substantial.
She received her Ph.D in 1998, and by 1999, she was the sole speaker at the first gathering of families that would one day become the NODCC. It involved rustic cabins, sleeping bags, and the knowledge in all who attended that a seed had just been planted that could grow into something world-changing. That 1999 gathering sealed Dr. Paul’s commitment to working with the Schilmoeller family (founders of the ACC Network) and the ACC community. Two years later in Southern California, Barb Fonseca coordinated the first multi-speaker informational conference on ACC. During that conference, attendees joined the Schilmoeller’s, Barb and Lynn to brainstorm about “How to provide family support in a way that is sustainable & scalable to meet increasing needs?” The vision for a family organization germinated at the 2001 conference and blossomed into a formal structure in 2002. Lynn recalls, “The NODCC really emerged from the synergy of Barb, me, the Schilmoellers and Warren Brown…. saying, ‘How do we help these families?”
In 2003, the NODCC was incorporated with equal representation of parents and scientists/practitioners and the group set out immediately disseminate information and support families. Dr. Paul recalls, “I felt very blessed professionally early on to have found a topic that was scientifically very fascinating, but was also meaningful and personally important to people … and that no one else was addressing. That meant that I could have an significant impact …. Yet, this also meant I was swimming upstream.” She was told by other researchers she’d never be able to have a career studying such a little known condition, but she set out to prove them wrong. Prove them wrong she did.
She states this feeling of swimming upstream has given her empathy with families who are begging for services and trying to educate people about DCCs. There have been difficult moments where she was challenged by parents who questioned her commitment to the ACC community because unlike them (who had no choice but to engage head on with ACC), she could leave anytime. To this, Lynn answers, “Yes, I could leave but I’ve chosen not to.” And in the thirty years since her research began, this has been true. The NODCC and its goals have been integral to her life, the lives of her family members, and the lives of all the founders who have invested so much into the continued growth of the NODCC.
When asked about her goals for the blossoming future of ACC research, she brings up the many organizations that exist globally who are separately researching and gathering data on DCCs. She wishes to see greater coordination among researchers and creation of a sustainable infrastructure to support collaboration and data sharing. She envisions the sharing of resources, support, and the bolstering of a global community that combines family organizations and researchers in collaboration. She notes how long it has taken to gather participants in her studies, and wishes to share the resulting data with future researchers who may analyze it in novel ways that most effectively utilize all the information that has been generously given by research participants and their families. She also wants to see families stand up and get the attention of the NIH to draw more awareness to Disorders of the Corpus Callosum, so these conditions receive the funding, research, and attention they so greatly deserve.
According to Dr. Paul, “There is so much data out there, and there is a core of researchers who really love this topic and love these families –DCC research has the potential to truly blossom. It’s just sitting there, waiting for water and sunlight —i.e., financial support for scientific collaboration.”
In addition to participating in NODCC events and services, Dr. Paul is the founder and president of the International Research Consortium for the Corpus Callosum and Cerebral Connectivity (iRC5). She is a research scientist at California Institute of Technology (Caltech) in Pasadena, California. In her free time, she enjoys spending time with her grandchildren, and being creative through quilting, crafting, and building projects.
We’re so grateful for Dr. Lynn Paul’s career in ACC research and involvement in the NODCC through the years, and we look forward to seeing each of her goals realized as we forge ahead into the next 20 years of the organization.
This article is the second in a limited series called “Celebrating 20 Years of the NODCC – 2003-2023” – to read the first piece interviewing Co-founder Barb Fonseca, click HERE. Keep your eyes open in future months this year for additional anniversary pieces regarding the legacy of the NODCC.
Celebrating 20 Years of the NODCC – 2003-2023 – Co-Founder Lynn Paul Looks Back on Where the NODCC Has Been, Where We Are Now, and Where We’re Headed
By Miriam Bernard