Over 36 epilepsy organizations joined forces signing a letter to the House and Senate Appropriations Committees urging them to provide robust funding for epilepsy programs.
The letter was sent to Capitol Hill on May 17 in conjunction with the Congressional Epilepsy Briefing and as Congress starts work on the FY 2024 budget.
With a united voice, the organizations shared their strong support for epilepsies funding at the Department of Health and Human Services (HHS), Department of Defense, and Department of Veterans Affairs in the Fiscal Year 2024 (FY) federal budget.
Specifically, the organizations urged:
$13 Million for the Centers for Disease Control & Prevention (CDC)’s Epilepsy program
$5 Million for the CDC’s National Neurological Conditions Surveillance System (NNCSS) and a report on the current gaps in surveillance data and the feasibility, cost, and timing of expanding the System to the epilepsies
$164 million for the CDC’s Safe Motherhood and Infant Health Program in order to support and help expand the Sudden Unexpected Infant Death (SUID) and Sudden Death in the Young (SDY) Case Registry which has the ability to track SUDEP-related deaths up to age 20
$10 Million for a Pediatric-Onset Epilepsies Consortium to be established within parts of the National Institutes of Health (NIH) and a report on progress, key findings, and planned actions resulting from convenings of the Curing the Epilepsies conference
Within the Congressionally Directed Medical Research Programs: At least $12 Million for the Epilepsy Research Program, $175 Million for the Traumatic Brain Injury and Psychological Health Research Program, and at least $10 Million for the Tuberous Sclerosis Complex (TSC) Program
$23.585 Million for the VA Epilepsy Centers of Excellence (ECoE)
Want to join this letter? Contact Laura Weidner Lweidner@efa.org.