The Cute Syndrome Foundation: SCN8A Support, Awareness, and Research
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Dr. John Schreiber Launches SCN8A Survey and Webinar for Medical Providers in Partnership with TCSF

9/30/2019

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In partnership with The Cute Syndrome Foundation, John M. Schreiber, MD from Children's National Hospital is collecting survey data from health care providers. The survey is intended to assess comfort in ordering and interpreting genetic testing and knowledge among medical professionals about SCN8A-related epilepsy, preferred treatments, and SUDEP risk. This research will help direct future education initiatives.  Click the button below for access to the survey (Medical Professionals only, please).
SURVEY
 There is a also a free informational webinar given by Dr. Schreiber geared towards clinicians that will provide an overview of genetic evaluation in patients with refractory epilepsy with particular attention to SCN8A. This is being held by Global Genes from 1-2 pm EST on Wednesday, October 2. Please click on the following button to register. The password to access the webinar, when available is TCSF2019. 
WEBINAR
This webinar will provide a brief overview of genetic evaluation in refractory epilepsy and specific examples of how a positive test may influence management. SCN8A-related epilepsy will be discussed in detail, with attention to epilepsy phenotype, diagnostic testing, associated co-morbidities including sudden unexpected death in epilepsy, and treatment.
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2019 SCN8A Clinician, Researcher, and Family Gathering Booking Information

9/21/2019

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​Our SCN8A Annual Clinician, Researcher, and Family Gathering will be held in conjunction with the American Epilepsy Society Conference on December 6-7, 2019 at the Renaissance Harborplace Hotel in Baltimore Maryland. If you are a Medical Professional who would like to join the meeting or the caregiver of a child with SCN8A, please email Shelley Frappier for information about joining the event.
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2019 SCN8A Research Roundtable in Chapel Hill, NC

9/19/2019

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The 2019 SCN8A Research Roundtable took place in Chapel Hill, North Carolina in July. This event brought together a select group of key SCN8A professionals for an intensive strategic planning meeting. Over a day and a half of meetings, participants focused on the state of SCN8A research, collaborate on grant efforts, and outlined next steps necessary to translate the scientific understanding of SCN8A into improved treatments and outcomes for individuals living with SCN8A. We believe the collaborative work between family advocacy groups, clinicians, researchers, and industry partners in driving research forward is key.
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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.

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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