Events

• Welcome: Mary Duffy, The Danny Did Foundation 
• Speaker: Rebecca Greene,  Bereaved Parent

Moderator:

Mary Duffy, The Danny      Did Foundation 

Grief is a journey that doesn’t follow a set timeline, and the pain of loss can endure long after the initial shock has passed. This panel focuses on the long-term nature of grief, exploring how it evolves over the years and offering insight into the ways it can change while remaining a powerful force. For those who are earlier in their grieving process, hearing from those who have walked this path for a decade or more can offer reassurance, comfort, and a sense of community. 

Panelists:

• Allison Austin, Bereaved Spouse and Advocate
• Amber Abrams, Bereaved Parent and Advocate
• Francesco and Vicki Salituro, Bereaved Parents and Advocates 

Moderator:

Alison Kukla, MPH, Partners Against Mortality in Epilepsy

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.

Panelists:

• Shelley and Shane Hutchison, Bereaved Parents and Advocates
• Tara Rodgers, Bereaved Parent and Advocate
• Maddie Bush, Bereaved Sibling and Advocate

Moderator:

Maureen Slotnick, MSW, Epilepsy Foundation 

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

Introduction: Alison Kukla, MPH, Partners Against Mortality in Epilepsy

• Alison Kukla, MPH, Partners Against Mortality in Epilepsy

• Gardiner Lapham, RN, MPH and Jeff Buchhalter, MD, PhD

This plenary will kick off with a special tribute to the CDC Epilepsy Program. It will also explore how strategic, evidence-based public health campaigns can drive awareness, influence policy, and improve outcomes in epilepsy. Drawing on lessons from national efforts at the CDC, the session will highlight what works in public health messaging and how these strategies can be adapted to support epilepsy awareness and safety.

Honoring CDC’s Leadership in Epilepsy Research and Awareness

•  Jeff Buchhalter, MD, PhD

Building Public Health Campaigns that Work: Lessons from the CDC

• Kevin Griffis, former CDC Communications Director

Moderators:

Lisa Bateman, MD, Cedars-Sinai and

Elizabeth Donner, MD, MSc, FRCPC, The Hospital for Sick Children, Toronto

Among the most tragic deaths of people with epilepsy are those that can be prevented. Accidents, trauma, and mental health-related mortality remain prevalent and require urgent attention. This session will explore the burden of accidental deaths from drowning, trauma, and choking, and strategies to reduce them; address the critical role of mental health disorders, including depression and PTSD, particularly in vulnerable groups like veterans; and review the latest guidelines for risk reduction counseling on topics such as driving. A focus on available practical tools and communication strategies will be offered in addition to a discussion on continued gaps in research and ways forward.

Faculty:

• Julie Lazzara, PhD, Bereaved Parent, Landon’s Legacy Foundation
• Nicole Odom, MD, Dartmouth Hitchcock Medical Center
• Mary Jo Pugh, PhD, RN, University of Utah
• Ben Tolchin, MD, MS, FAAN, FAES, Yale School of Medicine

Moderators:

Tom Stanton, The Danny Did Foundation and 

Robyn Whitney, MD, FRCPC, McMaster University

Advancing progress against SUDEP and other causes of death that impact the epilepsy community requires bold collaboration across research, clinical care, and public policy. In a time of shifting funding priorities and increasing need, new models of engagement are essential. This session highlights how collaborative initiatives rooted in shared language, data, and advocacy can drive meaningful change, even amid uncertainty. Featured topics include an updated SUDEP definition from the International League Against Epilepsy (ILAE), recent U.S. legislative efforts focused on epilepsy mortality, and the critical role of unified data collection in accelerating and scaling impact. 

Faculty:

• Safaa Haddou, Bereaved Parent
• Lisa Bateman, MD, Cedars-Sinai and Elizabeth Donner, MD, MSc, FRCPC, The Hospital for Sick Children, Toronto
• Laura Weidner, The Epilepsy Foundation of America
• Vicky Whittemore, PhD, NIH / NINDS

Moderators:

Alison Kukla, MPH, Partners Against Mortality in Epilepsy and Mary Duffy, The Danny Did Foundation

Grief profoundly affects patients, families, and healthcare providers across the epilepsy community. This session will explore the emotional and systemic impact of epilepsy-related deaths through three different lenses: the personal experiences of healthcare providers coping with patient loss, the challenges faced by families and individuals dealing with grief, and the current state of clinician education on SUDEP and patient communication. Together, these discussions will highlight the importance of support, awareness, and compassionate communication in the face of loss. This session offers skills to foster clear, compassionate, and patient-centered communication. Participants will gain practical knowledge to respond thoughtfully and effectively to grief, uncertainty, and risk.

Faculty:

• Naum Shaparin, MD, MBA, Bereaved Parent, Mark Shaparin Foundation
• Vinay Puri, MD, University of Louisville
• Archana Pasupuleti, MD, MBA, Pediatrix
• Suvasini Sharma, MD, DM, FRCPCH, The Hospital for Sick Children, Toronto

Moderators:

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

Changes in brain activity that occur as a function of sleep-wake states and the time of day greatly influence seizures, human physiology, and the risk of mortality. This session delves into the critical roles of sleep, arousal, and physiological rhythms in seizure-related mortality. Speakers will examine how sleep-wake states impact seizure outcomes, explore the links between time of day and/or circadian rhythms and mortality risk, and discuss how these factors influence breathing, cardiac function, and autonomic control. Together, these talks will highlight emerging insights into the mechanisms that may underlie fatal seizures and inform prevention strategies.

Faculty:

• Colleen O’Connor, Parent Advocate, Danny Did Foundation
• Rosario Ciliento, MD, University of Wisconsin-Madison
• Birgit Frauscher, MD, FACNS, FAES, Duke University
• Mark Quigg, MD, MS, FANA, FAES, University of Virginia

Moderators:

Elaine O’Loughlin, PhD,     CURE Epilepsy and Alison Kukla, MPH, Partners Against Mortality in Epilepsy

This session explores innovative approaches to reducing the risk of SUDEP through personalized care, clinical tools, and social support. Presenters will discuss how individualized treatment strategies may help mitigate risk, the development and future of SUDEP risk calculators in practice, and the vital role families, peers, and communities play in prevention. Together, these talks will offer a multidimensional view of how we can move from understanding risk to taking action.

Faculty:

• Tom Nugent, Epilepsy Advocate
• Rajesh Ramachandran Nair, MD, FRCPC, McMaster Children’s Hospital
• Olivia Hogue, PhD, MPH, Cleveland Clinic 
• Sheryl Haut, MD, Montefiore Medical Center

Moderators:

Sam Lhatoo, MD, UT Health and Jeff Buchhalter, MD, PhD

This plenary will explore cutting-edge applications of artificial intelligence in epilepsy care, from machine learning to natural language processing. Experts will present advances in identifying sleep-based biomarkers of SUDEP, leveraging EMR data through NLP, and forecasting seizures and SUDEP risk using long-term EEG. Attendees will gain insight into how these emerging tools are shaping research, clinical practice, and future possibilities in epilepsy management.

Faculty:

• Teresa Prego, MBA, EpiWatch Inc., Parent, and Epilepsy Advocate
• Sam Lhatoo, MD, UT Health 
• Oman Magana-Tellez, PhD, UT Health Houston
• Licong Cui, PhD, The University of Texas Health Science Center at Houston
• Benjamin H. Brinkmann, PhD, FACNS, Mayo Clinic