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About Us

Epilepsies Action Network brings together parents, siblings, caregivers, and advocates in partnership with doctors, nurses, researchers, and policy makers to raise awareness and increase funding for The Epilepsies to improve the lives of all persons living with this disease.

History of the Epilepsies Action Network

Early Efforts: 1999-2021

1999

Epilepsy: A Report to the Nation

Epilepsy Foundation

March 2007

2nd Curing Epilepsy: Translating Discoveries into Therapies (added comorbidities and SUDEP)

April 2013

3rd Curing the Epilepsies 2013:

Pathways Forward Conference 

2018-2021

ELC Advocates Work Group formed

Many meetings to coordinate Advocates inputs to strategy, conference, agenda, crowdsourcing, campaign +

October 2021

Advocates publish an article titled Epilepsy Community at An Inflection Point

Professionals article also published

March 2000

1st Curing Epilepsy: Focus on the Future

White House + NINDS and Advocates

Turning point from treating seizures to identifying cures

2010-2012

Institute of Medicine (IOM) focused on public health and epilepsy

2017

NINDS and AES invite Epilepsy Leadership Council 

Advocates to Liaison with Benchmark Stewards (Laura Lubbers & Ilene Miller Co-Chairs)

January 2021

4th Curing the Epilepsies: 

Setting Research Priorities Conference

Rest of 2021

ELC Advocates Work Group disbanded

Advocate leaders from EF, CURE, REN, & DEE-P continue discussions

What We've Achieved: 2022

#1

Socialized idea

#3

Launched EAN

#5

Distilled FY 24 priorities with stakeholders

#2

Solicited stakeholder inputs on FY 24

#4

Coordinated letter to President Biden

(200 signors)

What We've Achieved: 2023

#1

Coordinated meetings with

Cong staffers for FY 24

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