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Every March, the NODCC is proud to partner with neuroscience organizations around the world to participate in Brain Awareness Week – an opportunity to spread our passion for the amazing brain, especially the incredible and adaptive brains of our friends with disorders of the corpus callosum. This year, we were fortunate to speak with corpus callosum researcher Dr. Linda Richards, department head at Washington University in St. Louis Medical School, Department of Neuroscience and scientific collaborator with the NODCC. Dr. Richards is passionate about corpus callosum research, which is evident the moment you speak with her and experience the wealth of knowledge she possesses, alongside her desire to know individuals with DCCs and their families in a deeper way. Learn more about the specific research she’s doing below in our Researcher’s Corner spotlight!
Dr. Richards shared that in her home country of Australia, there are many events that take place during Brain Awareness Week, and many that excite her here in the states, such as the “International Brain Bee” - a program for high school students to learn about the brain. Many of the public events around Brain Awareness Week are meant to inform the importance of brain research, but Dr. Richards added, “With high school students, these events also exist to get young people interested in science and scientific thinking, and to dispel myths around mental illness, neurological diseases, and developmental disorders, because they can be very misinterpreted.”
In addition to community-facing events during Brain Awareness Week, Dr. Richards also shared that this week exists to bring more awareness even to the medical community. “In the field, we’re trying to promote awareness of DCCs, because there are a lot of misunderstandings in the medical community about the lived experience of people with corpus callosum disorders. That is a big part of what I do when I’m giving talks.”
Another reason Brain Awareness Week exists is to let people know about the progress being done in brain research and positive movement in the diagnosis, treatment, and prevention of disorders of the brain. Dr. Richards had her own positive data to share: “When I first started working in this field,” she stated, “there was very little known about how the corpus callosum actually forms. Without our work, I think we’d still be wondering what causes these disorders. So even if we can’t regrow a corpus callosum, it does provide a lot of comfort to people to understand the cause. We combined DNA from our Australian cohort with Dr. Sherr’s, and we have had a much larger sample size. Through that, we’ve been able to provide some participants with their possible genetic diagnosis. We’re looking for patterns in the data now, whereas before we each had such small data sets that it wasn’t enough to look for patterns of commonality.” So in a way, Dr. Richards and her cohorts have given these families “an answer”, which is invaluable to families navigating the world of DCCs.
We asked Dr. Richards what would be the sign of a very successful 2024 Brain Awareness Week. She shared, “If there were firm evidence that people are taking notice, that would be great. We also have a misunderstanding from other researchers. There is belief that this group of disorders, because they’re so heterogeneous, that they’re not useful to study scientifically. Peer review is very important for obtaining funding to do our research, so a good realization from governments and funding bodies that this work is crucial would be terrific.”
For any family who has not yet signed up to be a part of the research surrounding DCCs, Dr. Richards shares the positive effects. “[This research] allows us to build up a relationship with families and participants. For me that’s a very important part of the research. I like to get to know what the challenges are, and how they change throughout life. For people with these disorders, what we can offer is knowledge. And ‘knowledge is power.’” If more families sign up to participate in research, Dr. Richards added, “In the future we would have a much better prognostic ability, so even if in a fetus a corpus callosum disorder is diagnosed, and we could link it to specific genetic disorder, if we have enough people with that exact genetic mutation, we could build on that as to what therapies were effective in that group, then we could provide that information to clinicians, and they’d have a much better way of knowing how to support that family. We will have the ability to diagnose much earlier, which means that interventions can start much more quickly.”
One of the best ways to do your part this Brain Awareness Week is to get involved! Change your social media profile picture to the NODCC's Brain Awareness Week graphic shared on all social media channels, and feel free to share some of the Truth or Myth posts we share this week. If you’re interested in being part of the exciting research surrounding disorders of the corpus callosum, click here to find many research participation opportunities through the NODCC, or click here to learn more about participating in Dr. Richard’s and her colleagues’ research. In addition to the resources at the NODCC website, Dr. Richards recommends you get involved with Brain Awareness Week through exploring the many helpful resources at the AusDocc website here, where there are myriad articles and research reports that pertain to DCC families globally, not just in Australia.
We hope you and your family find the 2024 Brain Awareness Week to be a time of education, inspiration, and participation!
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