We are a volunteer-run organization!
The Cute Syndrome Foundation's work depends on the support of dedicated volunteers. From events and fundraising to advocacy and community support, volunteers play an important role in helping us serve the SCN8A community.
Contact us to learn more about volunteer opportunities.
Contact us to learn more about volunteer opportunities.
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Hillary Savoie, PhDTCSF Founder, Writer, Advocate and Esmé's MomHillary Savoie, PhD is the Founder and President of The Cute Syndrome Foundation. Her daughter Esmé has mutations in PCDH19, SCN8A, TBL1XR1, and MAP 3K7—making such a complex genetic puzzle that she's been written about in the Wall Street Journal. Hillary writes personal essays and reported features about life with medically-complex children for Romper.com. Her stories about Esmé have been featured on the New York Times Parenting Blog, the podcast Story Collider, among others.
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Danielle HaywardInterim Executive Director and Lucy's MomDanielle Hayward is the Interim Executive Director of The Cute Syndrome Foundation. Her daughter, Lucy, was diagnosed with SCN8A at just two months old and ultimately passed away from complications at the age of three. That profound loss only deepened her commitment to the SCN8A community, and her hope for a brighter future for others guides her advocacy. Danielle began volunteering with TCSF in 2022 and joined the foundation’s Executive Committee as Director of Development and Communications in 2023.
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Board of Directors
Hillary Savoie, PhDFounder and President
Lan Aronson, PhDVice Secretary
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Marianne SutcliffeSecretary
Philip GitlenVice Chair
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Ryan PitinoTreasurer
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Executive Leadership Team
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Past Annual Reports
Past PCDH19 Efforts Privacy Policy The Cute Syndrome Foundation PO Box 842 Ozark, MO 65721 |
The Cute Syndrome is registered as a tax-exempt organization under IRS section 501(c)(3).
Our tax identification number is: 46-2699066. © The Cute Syndrome Foundation, All rights reserved
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