Get to Know Double Cortex Xperience

When my two sons began experiencing epilepsy, our family entered a journey filled with questions, uncertainty, and a search for answers. Through genetic testing and medical imaging, we learned that both of my sons had a DCX mutation associated with X-linked lissencephaly. Our journey continued when my daughter, Reyna, was diagnosed with Subcortical Band Heterotopia (SBH), a rare neurological condition affecting brain development. Through her diagnostic process, I discovered that I, too, have SBH.

Receiving my own diagnosis as an adult helped me better understand experiences throughout my life that had previously gone unexplained. Navigating these diagnoses, both as a mother and as someone living with SBH, showed me the importance of accessible information, advocacy, and community. That understanding eventually led me to co-found Double Cortex Xperience (DCX) alongside Shonna Lucas, creating a dedicated space for individuals and families affected by SBH and DCX-related disorders.

About Subcortical Band Heterotopia (SBH) and DCX-Related Disorders

Subcortical Band Heterotopia (SBH) is a rare malformation of cortical development that occurs when neurons do not complete their expected migration during fetal brain development. This results in a band of neurons located beneath the cerebral cortex that can be identified through magnetic resonance imaging (MRI).

SBH was first described in the medical literature in the late 1980s, following advances in neuroimaging. Many individuals with SBH have an underlying genetic cause, most commonly involving changes in the DCX (doublecortin) gene, which plays an important role in neuronal migration.

DCX-related disorders exist along a spectrum of cortical malformations that includes SBH and lissencephaly. Although these conditions share overlapping genetic causes and developmental mechanisms, their clinical presentations can vary significantly.

The exact prevalence of SBH remains unknown, in part because the condition is rare and may be underdiagnosed. Advances in MRI and genetic testing continue to improve recognition and understanding of SBH and related disorders.

Our Journey

Living with SBH or a DCX-related disorder looks different for every individual and family. Clinical features can include epilepsy, developmental and learning differences, communication challenges, motor and sensory differences, and differences in cognitive functioning and daily living skills. Epilepsy can involve different seizure types and varying levels of seizure control. Some individuals require lifelong support, while others experience fewer visible challenges.

For families, the journey often begins long before a diagnosis. Searching for answers, navigating medical evaluations, and advocating for appropriate care and educational support can be overwhelming. Receiving a diagnosis may provide relief and clarity while introducing new questions about the future and available resources.

The impact of SBH also extends beyond medical care, influencing education, communication, independence, relationships, and everyday experiences. At Double Cortex Xperience, we believe it is essential to recognize the whole person, including their strengths, interests, personalities, and goals, rather than defining individuals solely by their diagnosis.

Our Mission

Double Cortex Xperience was founded by Shonna Lucas and me after we connected through an SBH community forum. Although we lived in different states, we discovered a

shared understanding of the challenges facing individuals and families affected by SBH. Our

personal experiences, both as mothers of daughters living with SBH and through my own diagnosis, inspired us to create an organization dedicated to strengthening this community.

Our mission is guided by four pillars: CARE, COMMUNITY, RESEARCH, and ADVOCACY.

Through these pillars, we work to increase awareness, connect families, encourage research, support education, and amplify the voices of individuals living with SBH and DCX-related disorders. We recognize that families need more than medical information. They need meaningful connections, accessible resources, and a community that understands their experiences.

By collaborating with families, healthcare professionals, researchers, and rare disease organizations, we hope to build a stronger, more informed, and more connected SBH/DCX community.

I Am Especially Proud of...

I am especially proud of the dedicated space we have created for individuals and families affected by SBH and DCX-related disorders. When we began Double Cortex Xperience, one of our primary goals was to address the limited awareness and accessible information surrounding these conditions.

Through educational resources and awareness initiatives, we have worked to make complex topics more understandable while highlighting the lived experiences of individuals and families in our community. Our content addresses diagnosis, healthcare, education, advocacy, research, and everyday life with SBH.

One of our greatest achievements has been establishing a foundation of awareness, education, and connection for a community that has often struggled to find information and support. We hope these efforts help reduce isolation, encourage conversations, and ensure that individuals living with SBH and DCX-related disorders feel recognized and understood.

We're Excited for REN Because...

For a growing organization like Double Cortex Xperience, collaboration is essential. We are excited to join the Rare Epilepsy Network (REN) and connect with other organizations working to improve the lives of individuals and families affected by rare epilepsies.

Through REN, we hope to increase visibility for SBH and DCX-related disorders, strengthen connections among families and advocates, and create opportunities to collaborate with researchers, healthcare professionals, and other patient organizations. We believe that sharing knowledge and experiences across rare epilepsy communities can help improve access to resources, strengthen advocacy, and encourage future research opportunities.

We are equally excited to contribute the perspectives of individuals and families affected by SBH and DCX-related disorders. By learning from one another and working toward shared goals, we can help build a rare epilepsy community in which individuals and families feel more informed, supported, and empowered.

A Personal Note

My connection to DCX-related disorders is deeply personal. Both of my sons live with intractable focal epilepsy associated with a DCX mutation and X-linked lissencephaly. My daughter, Reyna, was initially diagnosed with ADHD before further genetic testing and MRI findings led to her SBH diagnosis. Through that process, I learned that I also have SBH.

Discovering my own diagnosis as an adult brought a new understanding of my lifelong experiences. It also reinforced how important it is for individuals and families to have access to accurate information and a community that understands what they are going through.

My experiences as both a mother and an individual living with SBH have shaped my commitment to advocacy. Alongside my co-founder, Shonna, I want Double Cortex Xperience to be a place where people can share their stories, find meaningful connections, and know that they are not navigating these challenges alone.

Every individual and family has a unique experience, and every voice deserves to be heard. Through Double Cortex Xperience, we hope to continue building a community rooted in understanding, connection, and the belief that every Xperience matters.

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By Olivia Pittman, Co-Founder, Double Cortex Xperience (DCX)