The Cute Syndrome Foundation: SCN8A Epilepsy Support, Awareness, and Research
  • Home
  • About
    • About SCN8A
    • About Us
    • Partner Organizations
    • Volunteers
    • Sponsors
    • 2021 Annual Report
  • Families
    • Caregiver Support
    • CUTE Connections Grant Application
    • Join our SCN8A Community
    • SCN8A Warriors
    • Educational Videos
    • Reference Guide
    • Resources
    • Shareable Graphics
  • Events
    • Annual SCN8A Clinician, Researcher, and Family Gathering
    • Researcher Roundtable
    • Awareness Day
    • Virtual 5k
  • Research
    • Clinical Trials
    • Research Grants
    • SCN8A Registry
  • Donate
  • Contact
  • Blog
  • Shop

SCN8A Volunteers

Picture

We are a volunteer-run organization!


Contact Karen for more information about volunteer opportunities.
Picture

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.
Follow Esmé
Picture

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. ​
Follow Stella

Board of Directors

Hillary Savoie, Ph.D.

Lan Aronson, Ph.D.

Philip Gitlen

Ryan Pitino

Marianne Sutcliffe

Executive Leadership Team

Picture
Contact Danielle

Danielle Hayward

Fundraising Director 
​
USA / Lucy's Mom​
Picture
Contact Karen

Karen Varner

Family Support Director 
​
USA / Lily's Mom​
Picture
Contact Liz

Liz Ramirez

Bereavement Support and Grants Advisor
USA / Will's Mom
Picture
Contact Megan

Megan Varner

Marketing Director / Technology Support 
​
USA / Lily's Sister​
Picture
Contact Shelley

Shelley Frappier

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

International Partners

Picture
Contact Amy

Amy Biddlecombe

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

Ben Clay (1978-2022)

SCN8A UK/Ireland Founder
​UK / Tilly's Dad
Picture
Contact Cinzia

Cinzia Scarcelli

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

Daniel Braz

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

Roland Waegner

SCN8A Europe Founder​
​Germany/ Bruno's Dad
SCN8A Europe

Social Media Team

Picture
Contact Dianely

Dianely Cabrera

Social Media Team Member
​USA / Max's Mom
Picture
Contact Heather

Heather Crowley

Social Media Team Member​USA / Tate's Mom
Picture
Contact Jaden

Jaden Bitton

Web Design
​
USA / Lennon's Mom​
Picture
Contact Kenz

Mackenzie Wardrope

Social Media Team Member
​
USA / Adelaids's Mom

TCSF Volunteers

Picture

Angie Day

USA / Kolton's Mom
Contact Angie
Picture

Erin Ledrich

​USA / Kalina's Mom
Contact Erin
Picture

Jennifer Stout

USA / Ryan's Mom
Contact Jennifer
Picture

Kristin Bejarano

USA / Peto's Mom
Contact Kristen
Picture

Mary Tone

USA /Billy's Mom
Contact Mary
Picture

Nora Lyons

USA /Blake's Mom
Contact Nora
Picture

Selene Johnson

USA /Kiya's Mom
Contact Selene
Picture

Denise Juroske Short

USA / Sadie's Aunt
Contact Denise
Picture

Jacob Gard

USA / Clayton's Dad
Contact Jacob
Picture

Katie Banks

USA / Wyatt's Mom
Contact Katie
Picture

Lacey Juroske
Memorial Ornament Designer/Creator

USA / Sadie's Mom
Contact Lacey
Picture

Megan Gard
​

USA / Clayton's Mom
Contact Megan
Picture

Ryan Phillips
​Men's Group Coordinator

USA /Abe's Dad
Contact Ryan
Picture

Trisha Rathke
Travel/Event Coordinator

USA /Megan's Mom
Contact Trisha
Picture

Emma Johnston
SCN8A Youth Ambassador and Patient

USA 
Follow Emma
Picture

Jen Costello

USA / Jonah's Mom
Contact Jen
Picture

Kayla Waldrop

USA / McKinlee's Mom
Contact Kayla
Picture

Madison Whigham

​USA / Mia's Mom
Contact Madison
Picture

Nancy Christensen

USA / Joey's Mom
Contact Nancy
Picture

Sandy Bush

USA /Cam's Mom
Contact Sandy
Past Annual Reports

Past PCDH19 Efforts

​Privacy Policy

The Cute Syndrome Foundation

PO Box 842 Ozark, MO 65721​
The Cute Syndrome is registered as a tax-exempt organization under IRS section 501(c)(3).
​
Our tax identification number is: 46-2699066.

© The Cute Syndrome Foundation, All rights reserved
Picture
Picture
Picture
  • Home
  • About
    • About SCN8A
    • About Us
    • Partner Organizations
    • Volunteers
    • Sponsors
    • 2021 Annual Report
  • Families
    • Caregiver Support
    • CUTE Connections Grant Application
    • Join our SCN8A Community
    • SCN8A Warriors
    • Educational Videos
    • Reference Guide
    • Resources
    • Shareable Graphics
  • Events
    • Annual SCN8A Clinician, Researcher, and Family Gathering
    • Researcher Roundtable
    • Awareness Day
    • Virtual 5k
  • Research
    • Clinical Trials
    • Research Grants
    • SCN8A Registry
  • Donate
  • Contact
  • Blog
  • Shop