May 17

Name: Congressional Briefing on the Epilepsies
Start: 2023-05-17T09:00:00-05:00
End: 2023-05-17T10:30:00-05:00
Location: Rayburn

Congressional Briefing on the Epilepsies

On Wednesday, May 17, join the Epilepsy Congressional Caucus , Epilepsies Action Network, Epilepsy Foundation, CURE Epilepsy, Rare Epilepsy Network (REN) , DEE-P Connections, TSC Alliance, Dravet Syndrome Foundation, Dup15q Alliance, Hope for HIE (Hypoxic Ischemic Encephalopathy), International Foundation for CDKL5 Research (IFCR), Lennox-Gastaut Syndrome (LGS) Foundation, Admin at Phelan-McDermid Syndrome Foundation, Ring14 USA, TESS Research Foundation, The Danny Did Foundation, and the Koolen-de Vries Syndrome Foundation to learn about the epilepsies and funding priorities that will improve access to care, health outcomes, and awareness. Seizures can happen anywhere at any time. To ensure you can safely assist someone experiencing a seizure, we will also provide a quick Seizure First Aid training.

Please note: this is an in-person event.

Special Remarks by:

Epilepsy Congressional Caucus Co-Chairs: Congressmen Greg Murphy, MD and Jim Costa

Speakers:

Brandy Fureman, PhD – Chief Outcomes Officer at Epilepsy Foundation and former Program Director at NINDS/NIH
Evelyn Gibbs – Parent who lost child to SUDEP (Sudden Unexpected Death in Epilepsy)
Dr. Archana Pasupuleti, MD – Pediatric Neurology Specialist with the Children’s National Hospital
Alex Yang – College student with epilepsy
Gabrielle Conecker – Chair of the Epilepsy Leadership Council, Founder of DEE-P Connections, and caregiver

Format:

Facts:

1 in 26 people will develop one form of epilepsy
3.4 million Americans have a form of epilepsy
100s of different kinds and causes make up epilepsy
1 in 1,000 with epilepsy will die of Sudden Unexpected Death in Epilepsy (SUDEP) – the mortality rate is almost twice as high for African Americans
$28 billion is the annual economic burden imposed by the epilepsies
No major advancements in understanding, research, care, and outcomes have occurred due to gaps in research/care collaboration and surveillance