Welcome to the International SCN8A Alliance
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.
We work to accelerate the pace of science on SCN8A in order to bring hope and improved outcomes for all those living with SCN8A and their families.
Motivated by and with families at the center of all we do, we work collaboratively with researchers, clinicians, pharmaceutical companies and beyond to improve treatments for and the quality of life of those living with SCN8A, other rare epilepsies and their families.
Welcome to our newest partners - Ajude o Rafa, working to support the Portuguese-Speaking SCN8A Community.
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!
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.
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.
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.