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

The Cute Syndrome holds SCN8A Epilepsy Researcher, Clinician, and Family Gathering

12/22/2018

0 Comments

 
Picture
On December 5th in Philadelphia about 85 guests--including seven children with SCN8A, 35 family members, and over 50 researchers and clinicians--met for the Cute Syndrome's first SCN8A Epilepsy Clinician, Researcher, and Family Gathering. The meeting allowed parents of children with SCN8A to tell leading researchers and clinicians more about their children and their lives. The meeting also served as a venue for clinical data about effective treatment of SCN8A to be shared among clinicians, and for researchers to share their research with the families--and each other.
It was also a way for us all to meet as people—who share a hope for the SCN8A community.

Speakers included Dr. Michael Hammer (University of Arizona), Dr. Ingrid Scheffer (University of Melbourne), Dr. Miriam Meisler (University of Michigan), Dr. Alan Goldin (
University of California​, Irvine), Dr. Philip Pearl (Boston Children's Hospital), and Dr. Mandy Harris (Indiana University, Riley). Cyndi Wright, Director of SUDEP Initiative, also spoke about the risks of Sudden, Unexplained Death in Epilepsy--a risk that has been reported to be especially high within the SCN8A population. 

The meeting also provided the chance for a number of parents to tell their children's stories and talk about their hopes for their children's futures. The Cute Syndrome Director, Hillary Savoie, and SCN8A Advisor, Juliann Bradish--both parents to children with SCN8A mutations--were joined by several parent speakers: Karen Varner (Mother to Lily), Mackenzie Wardrope (Mother to Adelaide), Sandy Bush (Mother to Cameron), Daniel Braz (Father to Rafael), and Dianely Cabrera (Mother to Maximuus)

Dianely Cabrera closed the parent speeches by beautifully summing up the feelings of all parents in the room. She said, "​My son is a prisoner to [SCN8A] and I pray everyday for his release. He is waiting for mommy and daddy to save him from his dark prison, but unfortunately we do not have the answers yet. Maybe there will come a day where someone at this amazing gathering will help us to find that answer. Until then, I will continue fighting to save my heart, my soul, my Max."
Photo Credit: Ryan Collerd
www.ryancollerd.com
0 Comments



Leave a Reply.

    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