Loading…
Friday July 17, 2026 9:00am - 9:45am CDT
Our founder and Executive Director will open our conference with a welcome message and some logistics for you to remember while you're here. Then, she'll discuss what happens after the surgery is over? For many families, the hospital discharge is just the beginning of a new chapter filled with questions about development, therapy, and long-term quality of life. In this session, we turn to our patient-powered data source to find answers: the Global Pediatric Epilepsy Surgery Registry. We'll review the latest Community Report and highlight the outcomes that matter most to families. We will share aggregated, de-identified data contributed by hundreds of caregivers like you, covering:
  • Developmental Trajectories: Real-world insights into motor, cognitive, and speech progress post-surgery.
  • The "Invisible" Challenges: Shared experiences regarding endocrine health, vision, and behavioral health that often go unremarked in the clinic.
  • Navigating Care: How registry data is identifying gaps in post-surgical rehabilitation and school support.

Speakers
avatar for Monika Jones

Monika Jones

Founder + Executive Director, Pediatric Epilepsy Surgery Alliance
Monika Jones is an inactive attorney and founder/executive director of the Pediatric Epilepsy Surgery Alliance. Her first son, Henry, was born with total hemimegalencephaly that caused medication-resistant seizures starting in utero. He required multiple hemispheric surgeries as well... Read More →
Friday July 17, 2026 9:00am - 9:45am CDT
Kalahari Ballroom 3001 Kalahari Blvd, Round Rock, TX 78665, USA

Sign up or log in to save this to your schedule, view media, check-in, leave feedback and see who's attending!

Share Modal

Share this link via

Or copy link