Watch our Executive Director and Co-Founder, Gabi - an SCN8A mom, share more about the International SCN8A Alliance in honor of Rare Disease Day!
Our Mission
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.
What's New
We Need Your Help
Your contribution will help families around the world dealing with the uncertainty of how to most effectively treat SCN8A.
We aim to foster earlier diagnosis, data-driven medication decisions, and better referral and treatment for the many related health issues associated with SCN8A.
Have you heard about our Registry?
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!
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.
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.
Accelerating Research
Watch these videos to hear about our impact from our partners and grantees.
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.
