A New Chapter for The Cute Syndrome Foundation

By Hillary Savoie
Founder and Board President of The Cute Syndrome Foundation

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Dear SCN8A Community,

​More than thirteen years ago, my daughter Esmé’s medical journey brought our family into the rare disease community and inspired me to establish The Cute Syndrome Foundation. What began as a personal effort to seek answers and connect with other families has grown into a global community dedicated to advancing research, supporting families, and building hope for those impacted by SCN8A.

Our progress as an organization has always depended on individuals who bring not only their personal connection to SCN8A, but also their professional expertise and commitment to advancing our mission. The strength of The Cute Syndrome Foundation comes from the people in this community who answer the call to contribute when it matters most. When it came time for me to step back from day-to-day leadership responsibilities, Kacie Craig’s experience and history with the foundation made her a natural choice to guide this community through its next phase.

Left: Hillary Savoie with daughter Esmé Right: Kacie Craig pictured with daughter Stella

Today, I want to share the next step in the leadership transition for the organization.
As of April 1, Kacie is stepping away from the Executive Director role of The Cute Syndrome Foundation. On behalf of the Board of Directors, I want to extend our heartfelt thanks to Kacie for her service as Executive Director over the past 4 years. During her tenure, Kacie made a transformative impact on how we support families living with SCN8A. She launched the Connor James Smith Patient Assistance Grant and expanded opportunities for social-emotional support and connection across our community. These efforts reflect an important part of our mission: ensuring families have meaningful support not only through research progress, but also while navigating the real and immediate challenges of living with SCN8A.

Although Kacie will no longer be the Executive Director, I am grateful that she will continue to support the foundation as a volunteer. Her commitment to SCN8A families remains as strong as ever, and she will remain part of this community and the work that we do.

Looking ahead, I am pleased to share that Danielle Hayward will be serving as Interim Executive Director of The Cute Syndrome Foundation.

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