SCN8A Volunteers

Members of the TCSF Executive Committee at the 2025 SCN8A Annual Gathering

We are a volunteer-run organization!

Hillary Savoie, PhD

TCSF Founder, Writer, Advocate and Esmé's Mom

Hillary 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.

Follow Esmé

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.

Contact Danielle

Board of Directors

Hillary Savoie, PhD

Founder and President

Lan Aronson, PhD

Vice Secretary

Marianne Sutcliffe

Secretary

Philip Gitlen

Vice Chair

Ryan Pitino

Treasurer

Executive Leadership Team

Contact Kacie

Kacie Craig

Family Programming Advisor
USA / Stella's Mom

Contact Shelley

Shelley Frappier

Director of Patient Engagement and Data Management
Canada / Nico's Mom

Contact Kelly

Kelly Johnston

Community Giving Projects Advisor
USA / Mae's Mom

Contact Jen

Jen Patrick

Administrative Support Specialist
USA / Sibby's Mom

Contact Liz

Liz Ramirez

Bereavement Support and Grants Advisor
USA / Will's Mom

Contact Megan

Megan Varner

Marketing Director
USA / Lily's Sister

TCSF Volunteers

Denise Juroske Short—USA / Sadie's Aunt
Dianely Cabrera—USA / Max's Mom
Lacey Juroske—USA / Sadie's Mom
Erin Ledrich—USA / Kalina's Mom
Heather Crowley—USA / Tate's Mom
Jacob Gard—USA / Clayton's Dad
Jen Costello—USA / Jonah's Mom
Katie Banks—USA / Wyatt's Mom
Jennifer Stout—USA / Ryan's Mom
Lacey Juroske—USA / Sadie's Mom
Mackenzie Wardrope—USA / Adelaids's Mom
Madison Whigham—USA / Mia's Mom
Kristin Bejarano—USA / Peto's Mom
Megan Gard—USA / Clayton's Mom
Sandy Bush—USA / Cam's Mom
Nora Lyons—USA / Blake's Mom
Selene Johnson—USA /Kiya's Mom