Uniting a Global Community: Highlights from the SCN2A & SCN8A International Conference

By Kacie Craig
​Executive Director, The Cute Syndrome Foundation

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In May of this year, I had the honor of representing The Cute Syndrome Foundation at the Third International SCN2A & SCN8A Conference and Family Gathering in Bonn, Germany. This unique event brought together 130 attendees—clinicians, researchers, industry partners, and families—from over 20 countries, all united by a shared mission: to better understand, treat, and support individuals affected by SCN2A and SCN8A-related disorders.
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Organized by SCN2A Germany, SCN2A Italia, and SCN8A Italia, and led scientifically by Drs. Walid Fazeli and Elena Gardella, the conference struck a powerful balance between scientific rigor and deep community connection.

Since its pilot launch in 2021, this international joint SCN2A-SCN8A conference has become a model of successful cross-border collaboration between two closely related genetic epilepsy communities. By bringing together families, clinicians, researchers, and industry leaders from around the globe, the event fosters a truly worldwide effort to accelerate understanding and improve care for individuals living with SCN2A and SCN8A.

Attending this conference was incredibly meaningful—not only as a representative of The Cute Syndrome Foundation, but also as a parent of a child with SCN8A. I had the chance to reconnect with familiar faces and finally meet others I’ve only known through social media or Zoom. These moments of in-person connection reminded me—yet again—just how powerful it is to be in a room full of people walking similar paths. I was able to celebrate alongside a family whose child had just come out of the PICU, and later sat in a tearful, heartfelt conversation with a newly bereaved family I had first met at the last international conference. These are the kinds of connections that stay with you. They remind us why we keep showing up, advocating, researching, and supporting one another—because no one should feel alone in this journey.

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I was also honored to share a presentation titled “Empowering Caregivers: Perspectives on Supporting Medically Fragile Children.” I spoke about the joys, challenges, and realities of raising a child with SCN8A, and emphasized the essential role of palliative care in supporting families as they navigate complex medical needs.

It was especially inspiring to witness the continued global leadership of the Dianalund group in Denmark, led by Drs. Elena Gardella and Rikke Møller. Their work remains foundational to our understanding of SCN8A. They currently lead the largest SCN8A Natural History Study, with data collected from more than 800 patients across hospitals worldwide. This monumental effort is not only a scientific achievement; it’s a critical step toward the development of meaningful, effective treatments.

Being part of this international gathering reaffirmed the strength, passion, and hope that drive our community forward. At The Cute Syndrome Foundation, we remain committed to supporting families, advancing research, and building a world in which every child affected by SCN8A and SCN2A has the care and opportunities they deserve.