PAME Conference 2023

• Moderators: Alison Kukla, Epilepsy Foundation and Mary Duffy, Danny Did Foundation
• Speaker: Stephanie Mingel, Bereaved Parent, Advocate

Dr. Maney and Dr. Nair will present on their current SUDEP research focused on SUDEP communication and understanding the caregiver perspective and the experience of traumatic loss and growth after SUDEP.

• Moderator: Alison Kukla, MPH, Epilepsy Foundation
• Panelists:
  • Kayli Maney, MD, Duke University
  • Rajesh Ramachandran Nair, MD, DM, DNB, FRCPCH, FRCP, FRCPC, FAES, CSCN(EEG), McMaster Children’s Hospital, Hamilton, Canada

Kelly Cervantes lost her medically complex daughter, Adelaide, in 2019 just before her 4th birthday.  After losing her daughter to epilepsy, she knows that grief is many things. It’s all-encompassing and something everyone will have to deal with, but it’s never linear. Just as what we are grieving varies, so do our journeys to process it. She will share and discuss the themes in her new book, Normal Broken: The Grief Companion for When it’s Time to Heal But You’re Not Sure You Want To.

• Moderator: Mary Duffy, Danny Did Foundation
• Speaker: Kelly Cervantes, Advocate and Author

This interactive panel discussion will be an opportunity to learn from individuals who have lost loved ones to epilepsy, while they share their stories and the work they’ve been doing to raise awareness about SUDEP in their memory.

• Moderator: Alison Kukla, MPH, Epilepsy Foundation
• Panelists:
  • Colleen Hosbach, Bereaved Parent, Advocate
  • Allison Hurt, Bereaved Parent, Advocate
  • David Schlobohm, Bereaved Parent, Advocate

Professor Helen Cross is an outstanding leader in the field of epilepsy care and research. As president of the International League Against Epilepsy, Dr. Cross is a driving force behind implementation of the recently adopted World Health Organization’s (WHO) Intersectoral Global Action Plan (IGAP) on epilepsy and other neurological disorders. She will discuss this landslide agreement and its significance towards driving prevention of premature epilepsy mortality across the world.

• Speaker: Professor Helen Cross, President ILAE

• Moderator: Daniel Friedman, MD, NYU Langone School of Medicine
• Speakers:
  • Kelly Cervantes, Advocate and Author
  • Elizabeth Donner, MD, MSc, FRCPC, The Hospital for Sick Children, Toronto
  • Colin Josephson, MD, MSc, FRCPC, CSCN (EEG), University of Calgary
  • Leah Blank, MD, MPH, Mount Sinai Hospital

1.     The Brainstem’s Role in Breathing and Death

In the past decade, converging lines of evidence from preclinical and clinical studies of the pathophysiological mechanisms of sudden unexpected death (SUDEP) have shown that this devastating outcome of epilepsy occurs when a seizure travels from the forebrain to the brainstem where it subsequently disrupts or interrupt the normal function of the cardiac, respiratory, or arousal centers. However, the neural pathways through which seizures travel to reach the vital control centers in the brainstem and the mechanisms of seizure-induced disruptions in these sites are not clear elucidated. This session will explore recent advances that shed light on forebrain-brainstem connectivity networks that are involved in modulation of cardiac and respiratory functions and their potential roles in SUDEP mechanisms.

• Moderators: Franck Kalume, PhD, University of Washington/Seattle Children’s and Erica Levitt, PhD, University of Michigan
• Speakers:
  • Nathan Baertsch, PhD, University of Washington
  • Brian Dlouhy, MD, University of Iowa Health Care
  • Kyle Pattinson, BM DPhil FRCA, University of Oxford

2.     Tackling Hard Conversations – Caregiver & Health Provider Perspectives

Too many epilepsy families have experienced the loss of a loved without ever being informed that sudden death was possible. This breakout examines the topic of communication between healthcare providers and patients/caregivers about risks that accompany epilepsy. Panelists will overview the state of SUDEP disclosure, provide the perspectives of caregivers, and discuss the role that nurses can play in these sensitive but critical conversations.

• Moderator: Tom Stanton, Danny Did Foundation
• Speakers:
  • Robyn Whitney, MD, FRCPC, CSCN (EEG), McMaster Children’s Hospital Ontario
  • Erin Fecske, DNP, APRN, CNRN, CPNP-PC, FAES, Children’s Mercy Kansas City
  • Kayli Maney, MD, Duke University

• Networking for early career attendees

1. Mortality in the Rare Epilepsies

People with epilepsy are at higher risk for premature death. The rare epilepsies represent a cohort of patients often with the most severe and complex presentations, increasing their risk that much more. This session will explore what is known about mortality and increased risk across the rare epilepsies and additional research and surveillance needed. We will hear from family members and organizational leaders about best practices in SUDEP education and grief support. And we will look at tools, like diaries, aimed at aiding in prevention.

• Moderator: Ilene Penn Miller, JD, Rare Epilepsies Network
• Speakers:
  • Jeff Buchhalter, MD, PhD
  • Tracy Dixon-Salazar, PhD, LGS Foundation
  • Mary Ann Meskis, Dravet Syndrome Foundation
  • Robert Moss, SeizureTracker.com

2. Identifying Genetics and Cardiac Variants in Epilepsy

This session will share the genomic research findings from the genomes studied by the SUID & SDY Case Registry. It will provide an update on the importance of comprehensive care for epilepsy patients to include cardiology. Finally we will discuss opportunities for earlier identification and better care of patients through newborn screening.

Speakers:

• Heather MacLeod, MS CGC, Centers for Disease Control and Prevention
• Megan J Roy-Puckelwartz, PhD, Northwestern University Feinberg School of Medicine
• Martin Tristani-Firouzi, MD, University of Utah Health
• Ingrid Holm, MD, MPH, Harvard Medical School

• Moderator: Elizabeth Donner, MD, MSc, FRCPC, The Hospital for Sick Children, Toronto
• Speakers:
  • Iris-Maria Killinger, Dr. iur, Oskar Killinger Foundation
  • Kristina Simeone, PhD, Creighton University
  • Shobi Sivathamboo, PhD, Monash University
  • Daniel Goldenholz, MD, PhD, MHSc, Beth Israel Deaconess Medical Center