The Cute Syndrome Foundation: SCN8A Support, Awareness, and Research
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Pilot Research Project with Children's National: Evaluating Education and Access to Expert Care for SCN8A

1/31/2019

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The Cute Syndrome Foundation is thrilled to share the awarding of a clinical research grant, originally announced at our 2018 SCN8A Clinician, Researcher, and Family Gathering, to Dr. John Schreiber and Children's National. The vision for this grant developed after the devastating loss of two infants in our SCN8A community last fall, and we are grateful to Dr. Schreiber for working with us to look for ways to improve access to expert advice in the treatment of individuals with SCN8A.

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TCSF Announces Leadership Change

1/29/2019

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The Cute Syndrome Foundation is announcing the departure of Juliann Bradish, PharmD, as our Co-executive Director. Juliann will be remaining on as a volunteer at TCSF, turning her focus toward the administration of our support group. Juliann began volunteering for TCSF in 2015, serving as our SCN8A Advisor. She then joined Founder Hillary Savoie, PhD, as Co-executive Director in 2017.
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Juliann with her family at our 2016 SCN8A Clinician, Researcher, and Family Gathering

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TCSF's Fourth Annual SCN8A Clinician, Researcher, and Family Gathering

1/2/2019

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On November 30 and December 1st The Cute Syndrome Foundation held our fourth annual SCN8A Clinician, Researcher, and Family Gathering, in conjunction with the American Epilepsy Society meeting in New Orleans, LA. We were joined by more than 100 medical professionals, industry representatives, and family members as we presented two days of important activities—including discussions of SCN8A research, forthcoming potential therapeutics, and parent/patient perspective. 
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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).
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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