Embracing Diversity and Evolution: The Cute Syndrome Foundation Marks 11 Years with a Meaningful Update to Our Logo

In honor of our 11th anniversary, The Cute Syndrome Foundation has removed the word “epilepsy” from the SCN8A heart in our logo to recognize the diversity within our community and our evolving understanding of SCN8A mutations. While it may seem like a subtle change, it is an important one.

When I started The Cute Syndrome 11 years ago in honor of my daughter Esmé, I envisioned it primarily as an outlet for sharing Esmé’s story—including the beautiful moments and the challenges as we navigated her epilepsy, medical complexity, and significant developmental delay. When Esmé’s SCN8A mutation was identified in 2015, we discovered a small community of children that seemed a whole lot like her. At the time, the majority of patients with SCN8A also faced refractory epilepsy as well as physical and developmental disabilities.  ​

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