The Cute Syndrome Foundation: SCN8A Epilepsy Support, Awareness, and Research
  • Home
  • About
    • About SCN8A
    • About Us
    • Partner Organizations
    • Volunteers
    • Sponsors
    • 2020 Annual Report
  • Families
    • Caregiver Support
    • Join our SCN8A Community
    • SCN8A Warriors
    • Reference Guide
    • Resources
    • Shareable Graphics
  • Events
    • Annual SCN8A Clinician, Researcher, and Family Gathering >
      • CUTIES Awards
    • Researcher Roundtable
    • Awareness Day
  • Research
    • Clinical Trials
    • Research Grants
    • SCN8A Registry
  • Donate
    • How You Can Help
    • SCN8A Awareness Gifts
  • Contact
  • Gathering Family Portal
    • 2021 Annual Gathering >
      • Video Page
    • 2020 Annual Gathering >
      • Video Page
    • 2019 Annual Gathering >
      • Day 1 Agenda
      • Day 2 Agenda
      • Presentations
      • Speakers
      • Video Page
    • SCN8A Lexicon
  • Blog
  • Shop

SCN8A Volunteers

Picture

We are a 100% 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 former 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.
Follow Esmé
Picture

Kacie Craig, M.Ed.

Executive Director—and Stella's Mom

Follow Stella

BOARD OF DIRECTORS

Hillary Savoie, Ph.D.

Lan Aronson, Ph.D.

Philip Gitlen

Ryan Pitino

Marianne Sutcliffe

LEADERSHIP TEAM

Picture

Shelley Frappier
Executive Assistant

​Canada / Nico's Mom
Contact Shelley
Follow Nico
Picture

Karen Varner
Family Support
​Director
 

USA / Lily's Mom
Contact Karen
Picture

Liz Ramirez
Bereavement Support
​Advisor/Grants Advisor

USA / Will's Mom
Contact Liz
Picture

Megan Varner
Marketing Director/Technology Support 

USA / Lily's Sister
Contact Megan

INTERNATIONAL PARTNERS

Picture

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

​UK / Thomas' Mum
Contact Amy
SCN8A UK & Ireland
Picture

Daniel Braz
Ajude o Rafa - Epilepsia SCN8A Founder

​Brazil / Rafael's Dad
Contact Daniel
Ajude o Rafa
Picture

Ben Clay
SCN8A UK/Ireland Founder

​UK / Tilly's Dad
SCN8A UK & Ireland
Picture

Roland Waegner
SCN8A Europe Founder

​Germany/ Bruno's Dad
Contact Roland
SCN8A Europe
Picture

Cinzia Scarcelli
SCN8A Italia and SCN8A Europe Founder

​Italy / Aron's Mom
Contact Cinzia
SCN8A Italia

SOCIAL MEDIA TEAM

Picture

Dianely Cabrera
Social Media Director 

USA / Max's Mom
Contact Dianely
Picture

Mackenzie Wardrope
Social Media Team Member

USA / Adelaids's Mom
Contact Kenz
Picture

Heather Crowley
Social Media Team Member

​USA / Tate's Mom
Contact Heather
Picture

Jaden Bitton
Web Design

USA / Lennon's Mom​
Contact Jaden

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

​Annual SCN8A Family Gathering Portal
​
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
    • 2020 Annual Report
  • Families
    • Caregiver Support
    • Join our SCN8A Community
    • SCN8A Warriors
    • Reference Guide
    • Resources
    • Shareable Graphics
  • Events
    • Annual SCN8A Clinician, Researcher, and Family Gathering >
      • CUTIES Awards
    • Researcher Roundtable
    • Awareness Day
  • Research
    • Clinical Trials
    • Research Grants
    • SCN8A Registry
  • Donate
    • How You Can Help
    • SCN8A Awareness Gifts
  • Contact
  • Gathering Family Portal
    • 2021 Annual Gathering >
      • Video Page
    • 2020 Annual Gathering >
      • Video Page
    • 2019 Annual Gathering >
      • Day 1 Agenda
      • Day 2 Agenda
      • Presentations
      • Speakers
      • Video Page
    • SCN8A Lexicon
  • Blog
  • Shop