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Our Team

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.


Hillary Savoie, PhD

TCSF Founder, Advocate, Writer, and Esmé’s Mom

Hillary is the Founder and Board Chair of The Cute Syndrome Foundation. Inspired by her daughter Esmé’s diagnosis, Hillary founded TCSF to support families, build research collaborations, and accelerate scientific discovery for SCN8A-related disorders. As a longtime rare disease advocate, she has worked across the nonprofit and biotechnology sectors, most recently serving as Head of Advocacy at Neurvati Neurosciences and GRIN Therapeutics.

Danielle Hayward

Interim Executive Director and Lucy's Mom

Danielle 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.

Board of directors

Hillary Savoie, PhD

Founder & Board President

Marianne Sutcliffe

Secretary

Ryan Pitino

Treasurer

Lan Aronson, PhD

Vice Secretary

Philip Gitlen

Vice Chair