The Cute Syndrome Foundation: SCN8A Epilepsy Support, Awareness, and Research
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TCSF Visits Praxis Precision Medicines in Cambridge MA!

7/28/2019

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Two weeks ago, Praxis Precision Medicines invited TCSF to their home base in Cambridge MA to talk to them about SCN8A community and to see how they can help—not just to help better treat SCN8A, but to do so as well as possible because they understand our experiences living with it.  

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Exciting News from Xenon Pharmaceuticals for the SCN8A Community!

7/5/2019

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TCSF Founder and Director, Hillary Savoie, with Xenon's VP of Biology, JP Johnson Jr, at Xenon during her visit in April 2019.
Last week, Xenon announced that they had received positive feedback from the FDA regarding the development of XEN901 that supported advancing XEN901 directly into a pediatric clinical trial examining its efficacy in pediatric patients with SCN8A epileptic encephalopathy (SCN8A-EE). This is important as most Anti-Epileptic Drugs (AEDs) have to be studied in adults before they are studied in pediatric populations.

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  • 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
    • Research Grants
    • SCN8A Registry
    • Clinical Trials
  • 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