2023 proved to be a pivotal year for epilepsies advocacy and policy. What started as a pilot project has demonstrated that these efforts can have significant impact in achieving meaningful change for the epilepsies.
In 2023, Epilepsies Action Network and our 42 partners:
Built a strong epilepsy stakeholder partner coalition narrowly focused on shared goals to increase federal funding for surveillance and research;
Advanced legislative goals to increase epilepsy research funding for surveillance and translation toward improving patient outcomes including report language in Senate and House bills and inclusion of a $1M amendment;
Cemented key relationships and grew Congressional Epilepsies Champions (36 strong) on the Epilepsy Congressional Caucus;
Increased awareness of the underfunding and breadth of the epilepsies via two Congressional briefings (May 17 and November 14) and Rep. Greg Murphy sharing this message on the House of Representatives floor;
Amplified understanding of the urgency of action and opportunities via key thought leaders including Congressmen Greg Murphy, Jim Costa and Steny Hoyer (quotes, video);
Strengthened relationships with key federal partners at National Institute of Neurological Disorders & Stroke (NINDS), National Center for Advancing Translation Sciences (NCATS), Centers for Disease Control (CDC), ARPA-H, and other agencies;
Attracted leading thought leaders, clinician-researchers, public personas and more through the National Advisory Board to advise and serve as Ambassadors for change;
Built a strong epilepsy stakeholder partner coalition narrowly focused on shared goals to increase federal funding for surveillance and research; and
Cultivated and secured a second donor to help fund and sustain this critical foundational work through FY 25.
@Gardiner Lapham
@Jillian Copeland
@Scott Copeland
@Walter Koroshetz
@Bernice Martin Lee
@National Institute of Neurological Disorders and Stroke (NINDS)
@Rare Epilepsy Network (REN)
@SynGAP Research Fund (SRF)
@The Danny Did Foundation @Angelman Syndrome Foundation
@CACNA1A Foundation
@CFC International
@The CASK Gene Foundation
@CSNK2A1 Foundation
@CureSHANK
@Dravet Syndrome Foundation
@Dup15q Alliance
@Epilepsy Alliance America
@Epilepsy Learning Health System
@The FamilieSCN2A Foundation
@Foundation For Angelman Syndrome Therapeutics
@Glut1 Deficiency Foundation
@HNRNP Family Foundation
@Hope for HIE (Hypoxic Ischemic Encephalopathy)
@International Foundation for CDKL5 Research (IFCR)
@International SCN8A Alliance
@Joey's Song
@KCNQ2 Cure Alliance
@KCNT1 Epilepsy Foundation
@KDVS Foundation
@KPTN Alliance
@Lennox-Gastaut Syndrome (LGS) Foundation
@Norse institute norseinstitute.org
@Paul's Purple Warriors
@Pediatric Epilepsy Surgery Alliance
@Phelan-McDermid Syndrome Foundation
@RASopathies Network USA
@Ring14 USA
@Snap25 Foundation
@The Sturge-Weber Foundation
@STXBP1 Foundation
@SYNGAP1 Foundation
@TBC 1D24 Foundation
@TESS Research Foundation