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