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.

While many families know Danielle as Lucy’s mom, over the past several years, she has also become an integral part of the foundation’s leadership. Since joining The Cute Syndrome Foundation’s Executive Committee in 2023 as Director of Development & Communications, Danielle has helped strengthen the organization’s fundraising and communications efforts and contributed to several of the foundation’s core programs. Danielle holds a Bachelor of Science in Business Administration and brings more than thirteen years of professional experience in marketing, communications, and nonprofit development roles. Her work and volunteer history includes expertise in partnership development, event coordination, project management, and community engagement, which will support the foundation’s growth.

Danielle with daughter Lucy (2020-2023)

Danielle understands both sides of this work: the professional structure required to grow a strong and sustainable organization, and the deeply personal reasons families come to The Cute Syndrome Foundation seeking connection and support. That combination is essential to the future of the foundation.

Leadership transitions offer a moment to reflect on how far we have come and how many people it takes to move this work forward. The volunteers who serve this organization are truly its backbone, allowing us to plan carefully for leadership continuity and ensure the foundation remains strong for the future. I am grateful to Kacie for her leadership and the care and commitment she brought to this role. I am also excited to welcome Danielle as we begin this next chapter.

From the beginning, this organization has grown because of the dedication, expertise, and generosity of families, clinicians, researchers, and advocates who share a commitment to improving the lives of individuals affected by SCN8A and their caregivers. I am grateful to work alongside this remarkable community and look forward to the progress we will continue to make together.

With gratitude,
​
Hillary Savoie, PhD
Founder & Board President
The Cute Syndrome Foundation