On May 17, Epilepsies Action Network (EAN) was pleased to participate in a Congressional Briefing on the Epilepsies in cooperation with the new #epilepsy Congressional Caucus, as well as valued partners. If you missed the briefing you can listen to a recording.
Thank you to Epilepsy Co-Chairs: Congressmen Greg Murphy, MD and Jim Costa for leading the charge in Congress and shining a light on the epilepsies. To actor, advocate, and National Advisory Board member Greg Grunberg and TalkAboutIt - thank you for your warm welcome and outreach.
Moderator Laura Lubbers of CUREEpilepsy, and panelists Archana Pasupuleti, MD, Pree Bhutani, Evelyn Gibbs, and Gabrielle Conecker offered compelling testimony about their diverse lived experiences of the epilepsies and the urgent need for translational research and surveillance.
In addition to the many hill staffers that attended, we were joined by many dedicated organization, professional, individual and government stakeholders across the epilepsies. We thank you!
Sincere appreciation to Jillian CopelandScott Copeland for their generous investment in the epilepsies community to create new opportunities for collaboration. Thanks to the hard work and hustle of Laura Weidner and her team and the Epilepsy Foundation, Liz Powell and her team at G2G Consulting, JayEtta Hecker and DEE-P, and Rare Epilepsy Network (REN). Gratitude to NAB member Kari Luther Rosbeck, as well as Katie Smith, and Gardiner Lampham for your support.
@CUREEpilepsy CureSHANK @DannyDid @DEE-PConnections Dravet Syndrome FoundationDup15q AllianceEpilepsy Foundation@EpilepsyLearningHealthcareSystem Glut1 Deficiency Foundation@HNRNPFamilyFoundation @HopeforHie International Foundation for CDKL5 Research (IFCR) @Koolen-deVriesSyndromeFoundation Lennox-Gastaut Syndrome (LGS) FoundationPediatric Epilepsy Surgery AllianceAdmin at Phelan-McDermid Syndrome FoundationRare Epilepsy Network (REN)Ring14 USA @TheSturgeWeberFoundation SYNGAP1 Foundation@TBC1D24Foundation @TessResearchRoundation TSC Alliance