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.  ​

Esmé in 2013, the year TCSF was founded.

Esmé and Hillary (2013)

We ultimately learned that Esmé’s SCN8A mutation was unlikely to be pathogenic, but it was not before we had fallen in love with this incredible community. 

Like many rare disease families, we had experienced so much isolation in our path to find a diagnosis. The idea of no longer being a part of the SCN8A community was devastating. However, even as Esmé’s diagnosis evolved, our SCN8A family continued to embrace us. We felt welcome and supported, despite no longer “fitting the mold.”

​This experience instilled in me, in us, that The Cute Syndrome Foundation is a place where we want everyone touched by SCN8A to belong.

Over the years we’ve come to understand that Esmé and my experience, while particular, wasn’t entirely unique: Having an SCN8A mutation means different things for different people. There are still many shared experiences across the SCN8A patient population, however, there is no one way to have SCN8A. At the extremes, some patients experience severe developmental encephalopathy with epilepsy, while others have intellectual disabilities, behavioral disorders, or movement disorders without seizures. Many more fall somewhere in between. 

Today, we honor the full spectrum of the SCN8A experience and emphasize that we remain an inclusive, supportive community for everyone.

Just like our understanding of SCN8A, The Cute Syndrome Foundation has grown in ways I could never have imagined. The small social media platform where I shared my daughter’s story has become a thriving organization representing the interests of the SCN8A patient community and offering support to families at every stage in their journey. 

We cannot move forward without targeted, evolving, translational research, but the patients and families are the heart of everything we do and they have always been, for 11 years. This small change in our logo represents another big step forward as we continue to navigate all that life with an SCN8A mutation entails—the beautiful and the challenging—together. The Cute Syndrome Foundation’s logo is a visual representation of what we stand for. The inclusion of the heart in our logo, which has been adopted nearly universally by this community, may mean many things to many people. 
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Esmé and Hillary (2024)

For me, though, it is a reference to the work that Esmé and I have done her entire life: living at the frontier between science and love, where I find hope best thrives.

Hillary Savoie
Founder and President
​The Cute Syndrome Foundation

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