Welcome to the International SCN8A Alliance

Get INFORMEDLearn more about SCN8A, genetics, emerging treatments and researchConnectBe INSPIREDConnect and collaborate with other SCN8A Families, Clinicians,
Researchers and Pharmaceutical companies
Advocate
Make an IMPACTContribute to finding answers, advocate for change and spread awarenessRegistry
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Wishes for Elliott and the Shay Emma Hammer Foundation are combining efforts to serve you better.
The Alliance Provides an umbrella for all stakeholders to coordinate and collaborate for improved outcomes for our children.
We’re working together to help our community

Be Informed, Be Inspired, and Make an Impact.

Our Mission

Our focus is on advancing the science to accelerate better treatments and improved outcomes for all those living with SCN8A epilepsy. We support regional family communities, sponsor research, and build partnerships within and among the scientific, academic, research, and government communities.


Learn more about us

Welcome to our newest partners – Ajude o Rafa, working to support the Portuguese-Speaking SCN8A Community.

What’s New?

2021 SCN8A REGISTRY – JOIN us! The International SCN8A Registry was established in 2014 by Dr. Michael Hammer. Dr. Hammer is an SCN8A parent and geneticist who first discovered the SCN8A gene’ association with epilepsy. The SCN8A Registry research study is approved by the Institutional Review Board at the University of Arizona. Your participation is greatly appreciated. Thank you!


Go to the Registry

Newly Diagnosed?

We’ve been there – and we’re glad you’ve found us. Check out our Guide, which we are always updating, and join our networks to meet other families and voice your concerns and questions.


Newly Diagnosed

Supporting Families

We facilitate families coming together by regions in the US and around the globe to improve individual families’ understanding of their children’s condition but also actively engage with and inform clinicians, researchers, and industry with cutting-edge, crowd-sourced data.

When SCN8A families contribute their child’s data with the dedicated longitudinal SCN8A Registry, families expand the foundation for rapid and consequential improvements in the understanding of this rare, often catastrophic, widely diverse disorder. This data is driving the effort by a number of pharmaceutical companies to bring drugs to market that specifically target SCN8A.


Join an SCN8A Family Network


https://scn8aalliance.org/wp-content/uploads/2021/06/Jack-Parent-Research1.mp4#t=3

Accelerating Research

We work to promote and facilitate the acceleration and translation of research to improve treatments and advance a cure for SCN8A and related epilepsies. We directly support promising early investigators researching peer-reviewed studies. We facilitate research building on the SCN8A Registry and promote open communication and collaboration in the broad SCN8A, related channelopathy and DEE epilepsy communities. Our recently formed SCN8A Research Consortium will bring researchers together in order to share their work in the lab, remove barriers to collaboration and publish jointly.

Learn More

Building Partnerships

Our founding partnership unites the work of Dr. Michael Hammer, the SCN8A father, and geneticist who first identified SCN8A as causing epilepsy, and Gabi Conecker, MPH, mom, and founder of Wishes for Elliott which has been advancing SCN8A research since 2014.

We work to build ongoing connections and communication between SCN8A families and the scientific community via our regional family networks. We work collaboratively to nurture partnerships among clinicians, researchers, industry, and government to increase the urgency and outcomes of SCN8A and related research.


Our Partners