Decoding
Developmental
Epilepsies
Bringing resources, research, and results to the DEE community
You can help!
VOLUNTEER
Lend your skills and passions to help us make progress on our mission to help families who have children profoundly impacted by rare epilepsies. Kinds of help could include legal guidance, social media planning, website management or fundraising.
DONATE
Donations are the lifeblood of our organization. We can only carry out our mission if we have the funds to support our extensive education, programming and research efforts.
These kids and their families are fighting for their lives every day.
We need your help to find better care, treatments and quality of life for those living with devastating developmental and epileptic encephalopathies (DEEs).
Decoding Developmental Epilepsies collaborates with families, researchers, clinicians, and industry partners across the globe to uncover the unknowns between where we are today, and a future with effective treatments and cures for all DEEs.
Contact us
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Our Story
Developmental and epileptic encephalopathies (DEEs) are a varied group of rare, catastrophic epilepsies. Characteristics of DEEs include seizures, behavioral disturbances, and/or EEG abnormalities that have negative effects on cognition and behavior. DEEs are often progressive and highly resistant to treatment.
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 hosts research efforts to improve the quality of life for all DEEs.
Decoding Developmental Epilepsies (DDE) is a 501(c)(3) nonprofit organization and the successor to Wishes for Elliott.