The Cute Syndrome Foundation: SCN8A Support, Awareness, and Research
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    • Educational Videos >
      • Annual Gathering Event Recordings
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      • Family and Researcher Roundtable Series
      • Meaningful Change Series
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    • Annual SCN8A Clinician, Researcher, and Family Gathering >
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    • Layla: The Festival of Mark Making
    • Virtual 5k
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Clinical Trial Readiness Series

​We believe that helping educate our families about drug discovery and clinical trials is essential to having an informed community that can consent to participate in studies. In September of 2020, we launched an educational series to engage the SCN8A families in important discussions surrounding drug discovery and clinical trials. Videos of the series sessions will be posted below as they become available. ​

Watch the Event Recordings


Fall 2021

View Series Videos
  • Sept. 11–CTR Kickoff: SCN8A International Advocacy Efforts and Updates
  • Sept. 15–A Meeting with an FDA Representative About the Drug Approval Process
  • Sept. 22–SCN8A and Potential Future Treatments 101
  • Sept. 29–How Families Can Help Beyond Clinical Trials
  • Oct. 6–Community Meeting with Praxis Precision Medicines

Fall 2022

View Series Videos
  • Sept. 21–From Data to Development: A Deeper Look at PRAX-562 and Your Role in its Progress
  • Sept. 28–Research Updates and Moving Beyond Clinical Trials 101
  • Oct. 5–The Cute Syndrome Foundation Updates and Drivers
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