We are a 100% volunteer-run organization!

Contact Shelley for more information about volunteer opportunities.

Hillary Savoie, PhD

Founder and Director, Writer, 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--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.

BOARD OF DIRECTORS

Hillary Savoie, Ph.D.

Lan Aronson, Ph.D.

Philip Gitlen

Ryan Pitino

Marianne Sutcliffe

LEADERSHIP TEAM

Shelley Frappier
Executive Assistant

​Canada / Nico's Mom
Current/Past Work: Support Group Onboarding; Contact Registry; Family Newsletter; Volunteer Coordinator; Support Group Admin

Megan Varner
Marketing Director

USA / Lily's Sister

Karen Varner
Family Support Director 

USA / Lily's Mom
Current/Past Work: SCN8A Angel Memorial Coordinator; Donor Thank You's; Conference In a Box Coordination; Assist w/ Volunteer Coordination; Assist w/ Annual Gathering Coordination

Liz Ramirez
Bereavement Support
​Advisor

USA / Will's Mom

Colleen Johnston
​Finance Director

USA / Emma's Mom

FINANCE COMMITTEE

Colleen Johnston
Finance Director

​USA / Emma's Mom

Tonya Baboneau
Foundation Financial Advisor

​Canada / Natasha's Mom

Wendy Woody
Accounting

​USA / Brandon's Mom

Mali Finn
Administrative Support

​USA / Elowen's Mom

Megan Gard
Inventory Manager

USA / Clayton's Mom

David Baboneau
Foundation Financial Advisor

​Canada / Natasha's Dad

Katie Banks
Donation Letters

USA / Wyatt's Mom​

FAMILY SUPPORT COMMITTEE

Karen Varner
Family Support Director 

USA / Lily's Mom

Kacie Craig
Family Activities

USA / Stella's Mom

Jennifer Costello
New Member Information

USA / Jonah's Mom

Shelley Frappier
Family Support Director

​Canada / Nico's Mom

Erin Rackham
​Bereavement and Family Support

USA / Bennett's Mom​

Liz Ramirez
​Bereavement and Family Support

USA / Will's Mom

Juliann Bradish
Family Support Group

USA / Adeline's Mom​

Sandy Bush
Family Activities

USA / Cam's Mom

Emma Johnston
SCN8A Youth Ambassador & Patient Advocate

USA / SCN8A Patient

MARKETING COMMITTEE

Megan Varner
Marketing Director

USA / Lily's Sister

Trisha Rathke
Special Events Coordinator

​USA / Megan's Mom

Jaden Bitton
Web Design/Management, Outreach

USA / Lennon's Mom

Daniel Braz
International AV/Tech Gathering

Brazil / Rafael's Dad

Jennifer Stout-Smith
Social Media

USA / Ryan's Mom

Dianely Cabrera
Social Media, Awareness/Outreach

USA / Max's Mom

Natan Pinheiro
International AV/Tech Gathering

Brazil / Rafael's Uncle

SCIENCE RESEARCH COMMITTEE

Maggie Nayyar
Science Director

Canada / Leo's Mom

Marianne Sutcliffe
Research & Strategic Planning

USA / Brianna's Mom

Daniel Braz
Grant Advisor & Partner

Brazil / Rafael's Dad

Nancy Christensen
Research & Strategic Planning

USA / Joey's Mom

Jill Lee Vorhes
​Research

USA / Mason's Mom

Alisha Wheeldon
Registry Liaison

USA / Clayton's Mom

Jennifer Stout-Smith
Research

​USA / Ryan's Mom