The Cute Syndrome Foundation: SCN8A Support, Awareness, and Research
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  • About
    • About SCN8A
    • About Us
    • Partner Organizations
    • Volunteers
    • Annual Report
  • Families
    • Join our SCN8A Community
    • Connor James Smith Patient Assistance Grant
    • Educational Videos >
      • Annual Gathering Event Recordings
      • Cheers to a Good Life
      • Clinical Trial Readiness Series
      • Family and Researcher Roundtable Series
      • Meaningful Change Series
    • Resources >
      • Caregiver Support
      • Reference Guide
      • Shareable Graphics
    • CUTE Connections Grant
    • SCN8A Warriors
    • Virtual Memory Wall
  • Events
    • Annual SCN8A Clinician, Researcher, and Family Gathering >
      • CUTIES Awards
      • Speakers
    • Researcher Roundtable
    • Awareness Day
    • Layla: The Festival of Mark Making
    • Virtual 5k
  • Research
    • Clinical Trials
    • Research Grants
    • SCN8A Registry
  • Donate
  • Contact
  • Blog
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SCN8A Volunteers

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We are a volunteer-run organization!


Contact Karen for more information about volunteer opportunities.
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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
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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.

Founder and President

Lan Aronson, Ph.D.

Vice Secretary

Marianne Sutcliffe

Secretary

Philip Gitlen

Vice Chair

Ryan Pitino

Treasurer

Executive Leadership Team

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Contact Danielle

Danielle Hayward

​Director of Development and Communications
​
USA / Lucy's Mom​
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Karen Varner

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

Liz Ramirez

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

Megan Varner

Marketing Director
​
USA / Lily's Sister​
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Contact Shelley

Shelley Frappier

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

International Partners

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Contact Roland

Roland Waegner

SCN8A Europe Co-Founder​
​Germany/ Bruno's Dad
SCN8A Europe
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​Ben Clay (1978-2022)

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

Cinzia Scarcelli

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

Daniel Braz

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

Social Media Team

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Contact Dianely

Dianely Cabrera

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

Heather Crowley

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

Mackenzie Wardrope

Social Media Team Member
​
USA / Adelaids's Mom

TCSF Volunteers

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Denise Juroske Short

USA / Sadie's Aunt
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Jen Costello

USA / Jonah's Mom
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Jennifer Stout

USA / Ryan's Mom
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Kristin Bejarano

USA / Peto's Mom
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Nora Lyons

USA / Blake's Mom
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Erin Ledrich

USA / Sadie's Aunt
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Katie Banks

USA / Wyatt's Mom
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Lacey Juroske

USA / Sadie's Mom
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Megan Gard

USA / Clayton's Mom
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Selene Johnson

USA /Kiya's Mom
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Jacob Gard

USA / Clayton's Dad
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Kelly Johnston

USA / Mae's Mom
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Madison Whigham

​USA / Mia's Mom
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Sandy Bush

USA / Cam's Mom
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
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  • Home
  • About
    • About SCN8A
    • About Us
    • Partner Organizations
    • Volunteers
    • Annual Report
  • Families
    • Join our SCN8A Community
    • Connor James Smith Patient Assistance Grant
    • Educational Videos >
      • Annual Gathering Event Recordings
      • Cheers to a Good Life
      • Clinical Trial Readiness Series
      • Family and Researcher Roundtable Series
      • Meaningful Change Series
    • Resources >
      • Caregiver Support
      • Reference Guide
      • Shareable Graphics
    • CUTE Connections Grant
    • SCN8A Warriors
    • Virtual Memory Wall
  • Events
    • Annual SCN8A Clinician, Researcher, and Family Gathering >
      • CUTIES Awards
      • Speakers
    • Researcher Roundtable
    • Awareness Day
    • Layla: The Festival of Mark Making
    • Virtual 5k
  • Research
    • Clinical Trials
    • Research Grants
    • SCN8A Registry
  • Donate
  • Contact
  • Blog
  • Shop