SCN8A Awareness Day
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PURCHASE AWARENESS DAY SHIRTS

SCN8A.EPILEPSY.AWARENESS

SCN8A Epilepsy is a rare disorder that is known to affect ~550 individuals worldwide. It can cause severe epilepsy, developmental delay, and other medical challenges. The gene SCN8A was isolated in humans by Michael Hammer, PhD, a geneticist who found the gene in his own daughter, Shay, soon after her death in 2011. We celebrate SCN8A Awareness Day on February 9th, Shay Hammer's birthday. ​
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SCN8A Awareness Day 2023: Celebrate Today
2023 video coming on February 9th!

You can also watch all our videos from previous years:
​2022: Our Cute Story
2021: Against All Odds
2020: Stronger Together
2019: We Choose Hope
2018: Keep Moving Forward


SCN8A Awareness Day Playlist

 About the first International SCN8A Awareness Day

The First International SCN8A Awareness Day was February 9th, 2017. Family-based advocacy organizations including Ajude o Rafa, The Cute Syndrome Foundation, and Wishes for Elliott—as well as individual families—shared the story of the grave impacts of this newly identified epilepsy.
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February 9th, 2017 marked what would have been the 21st birthday for Shay Hammer whose father Michael, at the time a population geneticist, was the first to isolate the SCN8A gene as the cause of his daughter’s struggle with epilepsy. Sadly the discovery came weeks after Shay’s sudden and unexpected death in 2011 at 15 years old – the first documented case of SUDEP in a child with an SCN8A mutation. 
 
Michael Hammer has since dedicated his life and professional work as a geneticist to advancing the scientific understanding of this devastating disorder. He has developed an innovative and powerful online registry for children with SCN8A. All proceeds from sponsored events and contributions to the three organizations were dedicated during this period to supporting the www.scn8a.net efforts.
                                
Michael Hammer shared that he is “moved by the extraordinary effort and commitment of families with children struggling with SCN8A and their efforts to promote awareness and support the registry” which is dedicated to furthering understanding of the causes, consequences, and treatment of SCN8A.

About SCN8A EPILEPSY

SCN8A mutations are associated with some of the most severe forms of epilepsy. 70% of affected children suffer from intractable seizures, double the rate among the overall epilepsy population. 
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Many children struggle with debilitating effects including 50% unable to walk, over 50% are nonverbal, and 30 % lack head control. Children with SCN8A are at very high risk of SUDEP for early death from a range of poorly understood causes related to epilepsy.
 
Little is known about SCN8A including an absence of established treatments,  Like many rare disorders,  families and their efforts to advance research offer the greatest hope for these beautiful children who deserve answers.

 SCN8A Awareness and Research Organizations

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Ajude o Rafa - Epilepsia SCN8A​

The Brazilian SCN8A Epilepsy Research and Awareness Foundation
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The Cute Syndrome Foundation

US Organization Funding SCN8A Research & Supporting SCN8A Families
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SCN8A France

Organization Supporting French SCN8A Families 
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SCN8A Europe

Organization Supporting European SCN8A Families
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SCN8A Italia

Organization Supporting Italian SCN8A Families
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SCN8A UK and Ireland

Organization Supporting SCN8A Families in the UK and Ireland
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SCN8A Portugal

Organization Supporting Portuguese SCN8A Families
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SCN8A Nederland

Organization Supporting Netherlands-based SCN8A Families
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SCN8A.net - University of Arizona 

SCN8A Registry and Information Resource
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Wishes for Elliott

US Foundation Funding SCN8A Research

 Awareness Raising Materials

Facebook Profile Photos

CANVA TEMPLATES
Facebook no longer supports profile frames, however we have created Canva templates that you can add your own photo to and upload to Facebook. Canva accounts are free to create. To make your profile photo:
  1. Open the template
  2. Click "uploads" on the left and upload your photo
  3. Drag it into the Awareness Day frame you want to use
  4. Click "share", then "download"
  5. Select the page number of the frame you used
  6. Click "download"
  7. Upload your new profile photo to Facebook!

Social Media Graphics

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File Size: 104 kb
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Download the press release below and update with your info to share with your local media outlets.
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