Stronger Together: Reflections from the FamilieSCN2A Conference

Every story within our DEE community carries its own weight, wisdom, and wonder. This past August, our team had the privilege of attending the FamilieSCN2A conference in Denver to not only increase our collaboration at the disease level (SCN8A & SCN2A) but to build on our work with DEE-P to collaboratively provide more support and empowerment to DEE caregivers. The few days together, connecting with caregivers, clinicians, researchers, pharmaceutical partners and local DEE parents, was an experience that was as enlightening as it was moving. We’re excited to share reflections from two incredible women on our board of Decoding Developmental Epilepsies (DDE).

Anne Thompson Heller, mother to Jordan who lives with an undiagnosed DEE, offers her perspective as a parent navigating the complexities of this journey. Ariel Gibbons, a special education teacher and best friend to a parent of a child with a DEE, shares her unique view as a supportive ally walking alongside families. While their experiences are distinct, both voices highlight the profound impact of connection, empathy, and community.

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Anne Thompson Heller
A Parent’s Reflection

I was thrilled to have been invited to attend the FamilieSCN2A Conference in Denver, Colorado as a representative from the Decoding Developmental Epilepsies Board of Directors. There, we had the opportunity to help host collaborative events with the goal of advancing research, quality of life, and treatment outcomes for those impacted by rare and severe epilepsies. What I experienced and took away was far more than I could have anticipated. But let me back up…

Decoding Developmental Epilepsies (DDE) is home to DEE-P Connections, the Inchstone Project, and the International SCN8A Alliance. My involvement with DDE began when my own daughter was confirmed to have an undiagnosed developmental and epileptic encephalopathy (DEE) at just four months old. It has been estimated that about 50% of genetic DEEs are undiagnosed and for the past four years, I’ve lived almost exclusively in this “undiagnosed” space.

While I understood the significance of having a diagnosis to guide research and treatment, I hadn’t been exposed, to this extent, to the benefits of precision gene-specific research, the tailored treatment approaches, and the community bonding that a diagnosis can provide. It was powerful to witness, and I was grateful to see this in action.

It also struck me how much funding is needed to do this work and how many researchers and scientists are needed in the DEE space to be able to study the over 900 genes to date that are known to cause DEEs. As I listened and learned, my understanding of a common transdiagnostic thread that crosses all DEEs was also confirmed. So much of what was presented, discussed, and proposed in conversations, roundtable discussions, and conference sessions felt applicable to our family’s undiagnosed journey. Kids with DEEs all fall along a continuum of severity, whether they have a diagnosis or not. They struggle with far more than epilepsy – GI issues, sleep issues, hypotonia and dystonia, cortical visual impairments, various intellectual and physical disabilities, and so much more.

As a nation, we are in a turbulent time for science, research, disability rights, diversity, accessibility, equity, and inclusion. The FamilieSCN2A conference confirmed for me how we are all stronger together. I will always celebrate the gene-specific research being done and I feel great inspiration to build a variety of resources and services for families across the DEEs. I look forward to ongoing collaborations, building bridges, and advancing science and services for all who are impacted. Thank you to the FamilieSCN2A Foundation for such a motivating, energizing, and overall, incredible experience.

Ariel Gibbons
A Friend’s Perspective

In July of 2025, I was invited as a board member for DDE to attend the FamilieSCN2A Conference and participate in the strategic planning for our team to collaborate with them on SCN8A and host sessions to coordinate work across the broader community of DEEs. I will admit that I was somewhat nervous to attend; I wasn’t sure what role I would play or what to expect; I didn’t know whether I would be able to contribute at the level that was expected, and I wanted to make the people I admire in this organization proud and happy that they had included me.

After attending the conference, I not only felt empowered to fight for the research and funding that our team will need, but I built connections with the women who are fighting their asses off for their own children and the children of others. I guess somewhere deep inside I felt that I didn’t belong in this community; that my relationship with Gabi and her family, who I love deeply, was somehow separate from my relationship with this community.

In attending this conference, I learned what I needed to know to be able to ask questions, have conversations, and fight with this community. I will not say that I understand what it is to be an SCN8A or DEE parent; I will not say that I can possibly fight these fights the way a parent can, or that I can talk about medications and treatments like a medical professional the way they can, but I can say that I feel these are my people, and that I am incredibly proud to work alongside them.

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We are deeply grateful to Anne and Ariel for sharing their reflections from our time together in Denver. Their stories illuminate the many ways support, advocacy, and shared experiences shape the DEE community. Whether as parents, friends, or advocates, each perspective strengthens our collective understanding and reinforces the hope that guides our work at DDE. Through their voices, we’re reminded that even in the face of challenges, the bonds we form and the stories we share can inspire resilience, compassion, and connection. And together, we are stronger in fighting for better care, treatments and quality of life for our children and communities.