We are a 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

Executive Leadership Team

Danielle Hayward

Fundraising Director 
​USA / Lucy's Mom​

Karen Varner

Family Support Director 
​USA / Lily's Mom​

Liz Ramirez

Bereavement Support and Grants Advisor
USA / Will's Mom

Megan Varner

Marketing Director / Technology Support 
​USA / Lily's Sister​

Shelley Frappier

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

International Partners

Amy Biddlecombe

SCN8A UK/Ireland Founder/ Social Media Team Member​
​UK / Thomas' Mum

Ben Clay (1978-2022)

SCN8A UK/Ireland Founder
​UK / Tilly's Dad

Cinzia Scarcelli

SCN8A Italia and SCN8A Europe Founder
​Italy / Aron's Mom

Daniel Braz

Ajude o Rafa - Epilepsia SCN8A Founder​
​Brazil / Rafael's Dad

Roland Waegner

SCN8A Europe Founder​
​Germany/ Bruno's Dad

Social Media Team

Dianely Cabrera

Social Media Team Member
​USA / Max's Mom

Heather Crowley

Social Media Team Member​USA / Tate's Mom

Jaden Bitton

Web Design
​USA / Lennon's Mom​

Mackenzie Wardrope

Social Media Team Member
​USA / Adelaids'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