SCN8A Consensus Media Kit

CDT-Image

Find all your DOWNLOADS below!

If you have any questions or would like to speak directly with someone from the
International SCN8A Alliance, please call (202) 599-0444 or email [email protected].

Download the full PRESS RELEASE.

Picture of Gabi Conecker, MPH​

Gabi Conecker, MPH​

Executive Director
& Co-founder

In the SCN8A community, Gabi is a formidable force for change. She works with a sense of urgency to transform research into actionable strategies against SCN8A-related disorders. Gabi is the mother of Elliott, who suffers from a severe form of SCN8A.

Recognizing that many of the discoveries made may not benefit Elliott directly, Gabi remains a relentless advocate for the entire SCN8A community. She focuses on what is most crucial—transformative care and treatments that improve the quality of life for those affected by SCN8A.

Her calling card has been driving impactful change by focusing research and galvanizing the global medical community.

Picture of Michael Hammer, PhD

Michael Hammer, PhD

Chief Scientific Officer
& Co-founder

Dr. Hammer is the Director of the University of Arizona Genetics Core and the geneticist who discovered that an SCN8A mutation causes epilepsy.

In a desperate attempt to determine the cause of his daughter Shay’s epilepsy, he conducted a full genome sequence on his entire family and identified the gene mutation. Shay was the second known case of SCN8A and the first diagnosed with epilepsy. Tragically, Shay has since passed away from SUDEP (Sudden Unexpected Death in Epilepsy), and a deep desire to honor her memory drives Dr. Hammer to be a pivotal figure in the SCN8A scientific community.

Since his discovery in 2012, Dr. Hammer has devoted his energies and personal resources to developing the dedicated International SCN8A Registry, conducting research, and leading weekly meetings with SCN8A families.

Picture of JayEtta Hecker, MS​

JayEtta Hecker, MS​

Board Chair
& Co-founder

JayEtta is an economist who specializes in independent public policy analyses and has held positions at the GAO and the National Academy of Sciences.

Her journey into SCN8A and DEE advocacy is deeply personal, driven by her connection to the cause as the mother of Gabi Conecker, the Executive Director, and grandmother to Elliott, who has SCN8A and Severe DEE. JayEtta is an incredible driving force for improved outcomes with a laser focus on putting families’ priorities first when it comes to research. SCN8A families couldn’t have a more resolute advocate.

“God couldn’t be everywhere, so he created mothers; mothers couldn’t be everywhere, so he created grandmothers.”

Publications

These two publications are an advanced-copy of the SCN8A Consensus on the Diagnosis and Treatment of SCN8A-Releated Disorders. Please do not copy or redistribute. Thank you.

 

Videos

Watch and share these videos on the effect of the International SCN8A Alliance's research effort.

Logos

Download our logos for reuse or distribution HERE.

Social Media

Download images for the Consensus on the Diagnosis and Treatment of SCN8A-Related Disorders, created to be shared on social media. Download the social media images HERE.

Infographics

Download these informative infographics on SCN8A-related disorders. Download the infographics HERE.