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.
This Giving Tuesday, help families around the world dealing with the uncertainty of how to most effectively treat SCN8A.
We are working with a team from around the world to develop the first-ever global diagnosis and treatment guidelines for SCN8A!
This effort is being undertaken in hopes that no matter where someone with SCN8A is diagnosed or who their doctor is, a comprehensive resource will be available to help inform better treatment and care decisions using the best possible information and experiences. 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!
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.
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.