Decoding
Developmental
Epilepsies
Delivering Resources, Research, and Results.
Delivering Resources, Research, and Results to Families with Severe Genetic Epilepsy and SCN8A-Related Disorders.
We serve two distinct yet deeply interconnected communities: families of children with developmental and epileptic encephalopathies (DEEs)—conditions that affect approximately 1 in 600 newborns—and those facing the challenges of ultra-rare SCN8A-related disorders, which have less than 1,000 diagnosed cases worldwide. Many individuals with SCN8A-related disorders also experience DEE, underscoring the connection between our core focus areas. We fulfill our mission through three key programs, each designed to address the unique needs of these communities. For more detailed information, we invite you to explore our programs below.
International SCN8A Alliance
Bringing together SCN8A families, doctors, researchers and pharma to find treatments that bring quality of life to those with SCN8A.
DEE-P
Connections
Serving the diverse community of families facing the challenges of severe developmental and/or epileptic encephalopathies (DEEs).
The
Inchstone Project
A project of DEE-P Connections that’s creating excitement in the DEE community. We’re creating tools to enable children with DEEs to participate in clinical drug trials.
WE help families on their quest for better treatments quality of life by implementing cutting-edge programs and research.
What began as a family’s personal quest to understand a devastating diagnosis has evolved into a global initiative — one that brings curated information and resources to families, promotes the advancement of improved care and treatments and hosts research efforts to improve the quality of life for families who have children with SCN8A-related disorders and rare epilepsies marked by difficult to treat seizures and a range of other developmental and health challenges also known as developmental and epileptic encephalopathies or DEEs.
Decoding Developmental Epilepsies is the successor to Wishes for Elliott, our first effort launched in 2014 to advance the science of DEE and SCN8A-related disorders.
We know that collaboration is key!
That’s why we collaborate with families, researchers, clinicians, and industry partners across the globe. Together, working to advance the science and find effective treatments, until we find a cure for our children.
Our Core Principles
Urgency.
Time is not on the side of our children.
Collaboration.
Working smarter together.
Science-focused.
We advance evidence-based care.
Family Centered
Putting families at the center of all we do.