We are a 100% volunteer-run organization!

Hillary Savoie, PhD

Founder and Executive Director, Writer, Storyteller, Advocate -- and Esmé's Mom

Hillary Savoie, PhD is the Founder and Director of The Cute Syndrome Foundation. Her daughter Esmé has mutations in PCDH19, SCN8A, TBL1XR1, and MAP 3K7. Hillary holds a doctorate in Communication and Rhetoric from Rensselaer Polytechnic Institute. Hillary writes about life with Esmé for Romper.com and her personal blog. She is the author of two short memoirs about life with Esmé: Around And Into The Unknown and Whoosh.

LEADERSHIP TEAM

Shelley Frappier
Family Support Director

​Canada / Nico's Mom

Megan Varner
Marketing Director

USA / Lily's Sister

Karen Varner
Family Support Director 

USA / Lily's Mom

Colleen Johnston
​Finance Director

USA / Emma's Mom

Maggie Nayyar
​Science Director

Canada / Leo's Mom

FAMILY SUPPORT VOLUNTEERS

Juliann Bradish

Facebook Support Group Admin
USA / Adeline's Mom​

Katie Banks

Facebook Support Group Moderator
USA / Wyatt's Mom​

Emma Johnston

SCN8A Youth Ambassador & Patient Advocate
​USA / SCN8A Patient

Jennifer Costello

New Families Outreach
USA / Jonah's Mom

MEDIA & TECH VOLUNTEERS

Dianely Cabrera

Social Media Coordinator & Outreach
USA / Max's Mom

Daniel Braz

International Media Strategist
Brazil / Rafael's Dad

Jaden Bitton

Website Design & Social Media
USA / Lennon's Mom

Natan Pinheiro

International Tech Strategist
Brazil / Rafael's Uncle

Alisha Wheeldon

Registry Liaison
USA / Clayton's Mom

SPECIAL EVENTS VOLUNTEERS

Megan Gard

Family Fundraising Liaison
USA / Clayton's Mom

Sandy Bush

Annual Gathering Volunteer
USA / Cam's Mom

Trisha Rathke

Travel & Events Coordinator
​USA / Megan's Mom

ADMINISTRATION & STRATEGY VOLUNTEERS

Mali Finn

Administrative Support Volunteer
​USA / Elowen's Mom

Wendy Woody

Accountant
​USA / Brandon's Mom