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Mission, Vision, and History

Our Mission

Improve outcomes for those impacted by developmental and epileptic encephalopathies (DEEs) and other severe neurological impairments (SNIs) by driving collaborative efforts to educate and empower caregivers and clinicians, accelerate groundbreaking cross‐disease research and treatments, and advocate for improved quality of life. 

Our Vision

A world where developmental and epileptic encephalopathies and severe neurological impairments are fully understood, effectively treated, and ultimately cured.

Caring for the Community

The DEEP Mission and Vision guide us in our work to make life better for families and individuals living with DEEs. To learn more about our strategic plan and what the future holds for DEEP, visit the page below.

DEEP Strategic Plan

DEEP History

2019

Launched at AES

Launched DEEP at AES in 2019.

2019
2020

Launched Webinar Programming

DEEP launched monthly dual medical expert and caregiver perspective webinar programming.

2020
2021

EAN Planning

Initial planning for the organization of the Epilepsies Action Network (EAN)

2021
2022

Launched the Inchstone Project

DEEP Launched the Inchstone Project global research collaborative.

2022
2023

Website Visitor Record

In 2023, more than 25,000 people visited the DEEP website from more than 120 countries.

2023
2024

Growing Programs & Team

  • Our 1st hire, Shannon Guardiola
  • The start of DEEP Chats/Dinner on DEEP
  • DEE Patient Listening Session with the FDA
2024
2025

Published 100th Webinar

  • Reached over 100 webinar topics of direct interest to DEE and SNI families
  • Hired our first Director of DEEP, Gabby Sarlo
2025
2026

Toward the Future

  • DEEP Strategic Plan
  • New partnership collaborative model
  • Increased scope
2026