The annual American Epilepsy Society Meeting brings together healthcare providers, scientists, advocates, industry, and other professionals dedicated to better outcomes for people with epilepsy. Epilepsy Alliance America representatives attended the Annual Meeting of the American Epilepsy Society in Los Angeles, California on December 6 - 10, 2024. Board members, staff, representatives from our member organizations, and members of the National Professional Advisory Committee had the opportunity to attend the gatherings.

Partners Against Mortality in Epilepsy (PAME) Conference

On Thursday, Liza Gundell, CEO of Epilepsy Services New Jersey and vice chair of Epilepsy Alliance America's Board of Directors, presented on legislative efforts at the Partners Against Mortality in Epilepsy (PAME) conference, sharing various efforts across the country to pass legislation that prevents premature death in epilepsy. Epilepsy Alliance America was honored to be part of this very important conversation and to learn from and support the bereaved families who continue to advocate so that other families are armed with information and education regarding epilepsy related mortality.

It's All Your Fault, Tyler Price!

Thursday evening, Epilepsy Alliance America representatives attended a performance of It's All Your Fault, Tyler Price!, a new musical that aims to de-stigmatize epilepsy and show that everyone deserves to be seen. This show features a young girl living with Lennox Gastaut Syndrome, and a portion of the proceeds benefit our friends at the LGS Foundation. Learn more about the musical here.

Poster Presentation

Michael Raddell, Community Educator and Camp Director for member organization Epilepsy Alliance West Central NY, presented a poster on their organization's swim program for children with epilepsy. He was able to share this program's success in helping children gain confidence and water safety skills with many attendees at AES and received very positive feedback!

Epilepsy Alliance America Meets Thousands of Attendees and Vendors

Epilepsy Alliance America representatives interacted with thousands of attendees at AES. It was great to meet health care providers, industry leaders, and other patient advocacy group leaders.

This year Epilepsy Alliance America again hosted two booths, one for Epilepsy Alliance America and one to spread awareness about the Seizure Action Plan Coalition. Both booths were well attended and many new connections were made!

National Professional Advisory Committee Meeting: Saturday, December 7, 2024

The National Professional Advisory Committee (NPAC) of Epilepsy Alliance America is composed of epilepsy experts across a wide range of medical disciplines. The NPAC formed in 2021 and meets virtually on a quarterly basis and in person annually. The NPAC leads and advises the Board of Directors on program policy and development. The NPAC ensures that we make accurate judgments about whether programs are focused and effective, caring and responsive, well led, and based on sound, scientific, and evidence-based data that considers the needs of people living epilepsy and those who care for them.

Members of the NPAC and members of the Epilepsy Alliance America Board of Directors were able to meet in person over breakfast in Los Angeles. We always look forward to this opportunity to gather together and have meaningful conversation about the current and future initiatives to continue supporting and impacting people living with epilepsy. This meeting, we were able to welcome our FIVE new members as well as honor and thank two members who are stepping down, Dr. Michael Smith and Dr. Marcelo Lancman.

Epilepsy Alliance America looks forward to attending AES in 2025. See you in Atlanta!