2024 PAME Conference

2024 PAME Conference

The PAME Conference is the partnership’s flagship event and occurs in advance of the Annual AES meeting each year. PAME partners play an important role in the planning and dissemination of conference proceedings to patients, families, researchers, clinicians, and others. PAME meetings are scientifically rigorous and informed by the experiences of people impacted and bereaved by epilepsy. They are cross-sectoral in nature and include updates and discussions on the latest basic and clinical research, as well as directions in awareness and education. While SUDEP remains a thrust of the conference, other causes of mortality continue to be elevated. PAME maintains a special focus on younger investigators and highlights their work through a competitive abstract selection process.

The 2024 meeting was held at the Sheraton Grand Los Angeles on December 5, 2024 with the family session occurring the day before on December 4th.

The conference planning committee is please to share the full program book.

Conference Recordings

Welcome Remarks + Family Story

Introduction: Mary Duffy, Danny Did Foundation

Speaker: Maggie Calvert, Bereaved Sibling, Advocate

The Evolution of Grief: Understanding Grief through Research

Dr. Buchhalter presented on a current grief paper research focused on understanding the grief experience overtime. Attendees participated in a brainstorming activity to identify the best next steps for research.

Moderator: Mary Duffy, Danny Did Foundation

Speaker: Jeff Buchhalter, MD, PhD

Journey Toward Healing: Navigating Unexpected Loss of Young Adults 

When a friend or loved one passes away unexpectedly the sense of shock and loss can be overwhelming. Our panelists discuss invaluable tools for processing the loss of a young adult and finding a path toward healing.

Introduction: Alison Kukla, Epilepsy Foundation

Moderator: Heather Kun, The Cameron Boyce Foundation

Panelists:

• Sallie Boggan, Bereaved Parent
• Esmeralda Lopez, Bereaved Family Member
• Sophie Reynolds, The Cameron Boyce Foundation

Panel Discussion: Turning Grief into Action

This interactive panel discussion includes individuals who have lost loved ones to epilepsy. They will share their personal stories of loss and their unique efforts to raise SUDEP and epilepsy awareness in memory of their loved ones.

Moderator: Alison Kukla, Epilepsy Foundation

Panelists:

• Tracy Estrada-Hiett & Tim Estrada-Hiett, Bereaved Parent and Sibling, Advocates with EF Los Angeles
• Liz Ramirez, Bereaved Parent, Volunteer with Cute Syndrome Foundation

Networking Roundtables

These interactive networking roundtables will allow individuals to share their stories, discuss their grief, and learn about available resources.

Introduction: Mary Duffy, Danny Did Foundation

Moderator: Libby Boyce, The Cameron Boyce Foundation

Closing Remarks

Alison Kukla, Epilepsy Foundation

Thursday, December 5, 2024, 8:00 am – 6:30 pm 

Welcome, Planning Committee

Keynote Speaker, Libby Boyce, The Cameron Boyce Foundation

All-Cause Epilepsy Mortality: Enhancing Early Recognition to Drive Prevention

Epilepsy is an incredibly common neurological disorder with a variety of possible co-occurring medical conditions that can lead to negative outcomes. While epilepsy is often treatable, those who struggle to find seizure control may be at an increased risk of morbidity and mortality. These harder-to-treat or “medically refractory” persons with epilepsy are not only at an increased risk of Sudden Unexpected Death in Epilepsy (SUDEP) but other causes of mortality as well. This session will focus on these other contributors and will specifically highlight the current understanding of the morbidity and mortality associated with status epilepticus, psychiatric comorbidities, and disorders of sleep in persons with epilepsy. In each presentation, the speaker will review the latest knowledge on early identification of these syndromes and discuss emerging opportunities to guide targeted investigations and interventions to reduce their impact on epilepsy morbidity and mortality.

Moderators: Lisa Bateman, MD, Cedars-Sinai, and Gordon Buchanan, MD, PhD, University of Iowa

Faculty:

• Kelly Sweeney-Widman
• Lawrence Hirsh, MD, Yale School of Medicine
• Sophie Bennett, Ms, PhD, DClinPsy, King’s College London
• Rama Maganti, MD, University of Wisconsin

SUDEP models, are we there yet?

Seizure-associated death, including sudden unexpected death in epilepsy (SUDEP), is a devastating potential consequence of epilepsy. SUDEP especially is often unwitnessed, making it difficult to understanding the sequence of events that lead to death. In such instances, animal models can be useful to systematically isolate and evaluate variable that may be involved in the pathophysiology. Animals models can be challenging to employ because they do not always perfectly model the human disease. Also, methodologies and variables collected can vary between laboratories. Here we address the questions: Are there animal models for SUDEP? How can imperfect models help to understand the pathophysiology of SUDEP? What else is needed from animal models? Can we standardize data collection across laboratories?

Moderator: Lori Isom, PhD, University of Michigan

Faculty:

• Vikram Bagchi, MSTP Fellow, University of Michigan
• Colleen Carpenter-Swanson, PhD, University of Richmond
• Laura Lubbers, PhD, CURE Epilepsy

Mortality Prevention Legislation – Opportunities to advance state level policy.

In recent years, there has been a flurry of activity at the state level, led by passionate and often bereaved advocates, to pass SUDEP legislation.  What does the current landscape of pending and passed state legislation look like?  What have we learned and where can we come together to promote future legislation that seeks to prevents premature death in epilepsy?

Moderator: Daniel Friedman, MD, NYU Langone Health

Faculty:

• Gardiner Lapham, PAME Leadership Committee
• Liza Gundell, Epilepsy Alliance America
• Dominique Brown, Epilepsy Foundation

Neurodegeneration across the life span & increased mortality risk: New research directions.

In this session, presenters will explore neurodegenerative diseases that are a result of aging, genetics, and metabolic imbalances and their relationship with epilepsy and premature mortality. These exciting and emerging fields of science pose new questions for research and clinical care.

Moderator: Jeff Buchhalter, MD, PhD

Faculty:

• Charity Adams, Bereaved Parent
• Ifra Zawar, MD, UVA Health
• Phillip Pearl, MD, Harvard Medical School
• Itay Tokatly Latzer, MD, Boston Children’s Hospital

 Seizure Detection Devices, where are we now and where are we going?

Technology within epilepsy is a rapidly evolving field that offers an exciting area of support for patients and caregivers who are seeking monitoring and alerting resources outside the hospital setting. This breakout will feature family perspectives, an overview of the state of seizure detection today, a recap of the device task force recommendations by the International League Against Epilepsy, and insights into how artificial intelligence (AI) will impact the future of seizure detection and prediction devices.

Moderators:  Mary Duffy and Tom Stanton, Danny Did Foundation

Faculty:

• Jennifer Sime, Danny Did Foundation
• Lauren Knepper, Danny Did Foundation
• Elizabeth Donner, MD, MSc, FRCPC, The Hospital For Sick Children Toronto
• Professor Johan Zelano, University of Gothenburg
• Sharon Chiang, MD, University of California San Francisco

Special Report from the ILAE SUDEP Taskforce

Faculty: Professor Rainer Surges, University Hospital Bonn

State of SUDEP Innovation

Our understanding of the possible causes of SUDEP has grown over the last two decades, with various preclinical models that now exist. Our treatment of epilepsy has also shifted over time with the advent of precision medicine and targeted therapies. Despite advancements in our knowledge of possible SUDEP mechanisms, specific treatments for SUDEP prevention are lacking. This session will explore the opportunities for innovation and growth within the field of SUDEP prevention, from clinical and basic science approaches to surgery and the use of epilepsy technology.

Moderators:

Tom Stanton, Danny Did Foundation, Robyn Whitney, MD, McMaster Children’s Hospital, and Karen Utley, International CDKL5 Foundation and Rare Epilepsy Network

Faculty:

• • Luis Lopez-Santiago, PhD, University of Michigan
  • Heather Mefford, MD, PhD, St Jude Children’s Research Hospital
  • Sandi Lam, MD, MBA, Lurie Children’s Hospital
  • Nathan Fountain, MD, UVA Health

Join us in Atlanta on December 4th, 2025 for the next PAME conference, with the family day occurring on December 3rd.