We are a 100% volunteer-run organization!

Contact Karen for more information about volunteer opportunities.

Hillary Savoie, Ph.D.

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.

Kacie Craig, M.Ed.

Executive Director—and Stella's Mom

Kacie Craig, M.Ed is the Executive Director of The Cute Syndrome Foundation. Her daughter, Stella, was diagnosed with SCN8A at five months old and it was then her passion for advocacy was ignited. Kacie began volunteering for TCSF in 2018 and joined the foundation's Executive Leadership Team in 2020. It was in early 2022 that she transitioned from her long standing career in radiography education to a full time advocate. Kacie and Stella have both been featured in epilepsy awareness segments on KMOV Channel 4 News in St. Louis, Missouri and KY3 News in Springfield, Missouri. ​

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

Karen Varner
Family Support Director 

USA / Lily's Mom

Liz Ramirez
Bereavement Support and Advisor/Grants Advisor

USA / Will's Mom

Megan Varner
Marketing Director/Technology
​Support 

USA / Lily's Sister

International Partners

Amy Biddlecombe
SCN8A UK/Ireland Founder/ Social Media Team Member

​UK / Thomas' Mum

Daniel Braz
Ajude o Rafa - Epilepsia SCN8A Founder

​Brazil / Rafael's Dad

Ben Clay
SCN8A UK/Ireland Founder

​UK / Tilly's Dad

Roland Waegner
SCN8A Europe Founder

​Germany/ Bruno's Dad

Cinzia Scarcelli
SCN8A Italia and SCN8A Europe Founder

​Italy / Aron's Mom

Social Media Team

Dianely Cabrera
Social Media Director 

USA / Max's Mom

Mackenzie Wardrope
Social Media Team Member

USA / Adelaids's Mom

Heather Crowley
Social Media Team Member

​USA / Tate's Mom

Jaden Bitton
Web Design

USA / Lennon's Mom​

TCSF Volunteers

Angie Day

USA / Kolton's Mom

Erin Ledrich

​USA / Kalina's Mom

Jennifer Stout

USA / Ryan's Mom

Kristin Bejarano

USA / Peto's Mom

Mary Tone

USA /Billy's Mom

Nora Lyons

USA /Blake's Mom

Selene Johnson

USA /Kiya's Mom

Denise Juroske Short

USA / Sadie's Aunt

Jacob Gard

USA / Clayton's Dad

Katie Banks

USA / Wyatt's Mom

Lacey Juroske
Memorial Ornament Designer/Creator

USA / Sadie's Mom

Megan Gard
​

USA / Clayton's Mom

Ryan Phillips
​Men's Group Coordinator

USA /Abe's Dad

Trisha Rathke
Travel/Event Coordinator

USA /Megan's Mom

Emma Johnston
SCN8A Youth Ambassador and Patient

USA 

Jen Costello

USA / Jonah's Mom

Kayla Waldrop

USA / McKinlee's Mom

Madison Whigham

​USA / Mia's Mom

Nancy Christensen

USA / Joey's Mom

Sandy Bush

USA /Cam's Mom