The Cute Syndrome Foundation: SCN8A Support, Awareness, and Research
  • 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

Meet TCSF’s New Executive Director

7/19/2022

1 Comment

 
Picture
All About Kacie:
Have you ever felt that you’ve lived multiple lives within one lifetime? For example, the person you were while in high school is slightly different from who you were while in college, and even more changes happen when you “grow up” and begin your career, have children, buy a house, etc… These paradigm shifts in life seem to guide you in different directions and your motivation and focus in life shift and change. 
​

I grew up in the small town of Sullivan, Missouri with my parents and younger sister until I set off for college in Springfield, Missouri. I knew I wanted to enter the healthcare field from a young age. I thoroughly enjoyed the “blood and guts” of my anatomy classes and my heart longed to help people in a meaningful way, thus entering into the field of radiography was a natural fit. 


Read More
1 Comment

New Beginnings: A Letter from Founder, Hillary Savoie

7/14/2022

0 Comments

 
Hello SCN8A Community,

Founding The Cute Syndrome Foundation and running it these last almost 9 years has been one of the greatest honors of my life. This foundation has been responsible for some of the greatest lessons, friendships, and joys of my life. Sometimes it happens that a thing you've made takes on a life of its own. This is what has happened with TCSF. That is why I am writing today with an announcement: I am thrilled to share with you the appointment of Kacie Craig as our new Executive Director. Many of you know Kacie, mom of Stella, as the host of our Meaningful Change and Clinical Trial Readiness Series. She also runs our weekly book club and has served on TCSF's volunteer executive committee. Kacie will be here to lead TCSF into the next era as we move into expanding our support, engagement, and educational efforts for the SCN8A community.

As I transition to supporting TCSF from a role on the Board of Directors, I am reflecting on the tremendous work we have done over the years. Our family support group and programming has expanded to offer programming year round to serve the educational, social and emotional, and engagement needs of the SCN8A community. Our revenue has increased 10-fold in our time focusing on SCN8A. We are fortunate to have a clinical trial enrolling in our community. This organization is currently run by a number of committed family members of individuals with SCN8A.

I am so proud of what we have accomplished. And I am so thrilled to see what is to come under Kacie's tenure.

With gratitude,
Hillary
0 Comments

    Archives

    March 2025
    January 2025
    May 2024
    April 2024
    January 2024
    October 2023
    July 2023
    May 2023
    January 2023
    July 2022
    March 2021
    December 2020
    November 2020
    September 2020
    January 2020
    December 2019
    September 2019
    August 2019
    July 2019
    January 2019
    December 2018

    Categories

    All
    Announcement
    Annual Gathering
    Awareness Day
    Community
    Drug Development
    Grants
    Research

    RSS Feed

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
Picture
  • 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