As parents to a child with a rare epilepsy diagnosis we experienced difficulty finding a space to connect with other parents who had children profoundly challenged by a these rare, intractable epilepsies (also known as developmental and epileptic encephalopathies - DEEs). From our years of work in the epilepsy space, we knew that many other genetic epilepsy groups had a spectrum of kids at the more severe end.

It eventually became clear that our natural community was other families with children severely affected by DEEs as they seemed to struggle with the similar profound and pervasive challenges we did. This community cuts across diverse diagnoses but is bound together by the unimaginable trauma of daily dealing with life-threatening challenges and feeling hopelessly isolated.

We conceived of DEE-P (Developmental Epileptic Encephalopathy-Project) Connections as a way to break through that isolation to facilitate connections and share critical resources with families facing similar challenges. Our initial focus is on offering webinars on topics of interest to this community. Each webinar will most likely feature an expert on the topic and always center around the voices of families on the frontlines of confronting these challenges every day. Knowing how unpredictable your schedules are, all webinars and any related slides, articles or other resources shared with during the webinar will be archived in our Resource Center.

We also gather resources from our partner organizations in order to share them more widely with this community of families dealing with severe DEEs. We have plans to start holding more regular Zoom sessions for families to connect and chat with others who get it, so be sure you follow us on Facebook and/or Instagram to learn more as those emerge.

We will always be guided by what this community conveys are their greatest needs and concerns. Our hope is that, over time, we can populate the Resource Center with information on all the topics that families are most critically looking for answers and support on. Please get in touch, anytime to share what you want to learn more about, are struggling with or if you need some support.

With hugs,
Gabi
Executive Director and Co-Founder of DEE-P Connections, a project of Decoding Developmental Epilepsies