PAME Conference 2023

2023 PAME Conference

The 2023 PAME conference was held in Orlando, Florida, on Thursday, November 30^th and the special session for bereaved families and advocates was held on Wednesday, November 29^th, the day before the conference.

We will post a recording of the plenary sessions on this page when they are available.

Conference Recordings

The PAME Planning Committee is pleased to share the full program book here.

Plenary 1

Welcome

PAME Planning Committee

Keynote speaker

Professor J 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.

Professor J Helen Cross, President ILAE

All-Cause Epilepsy Mortality

Understanding all-cause mortality in epilepsy is crucial because it extends our focus beyond SUDEP and highlights the various preventable factors contributing to premature deaths in individuals with epilepsy, such as accidents and comorbid conditions. This broader perspective allows us to develop more comprehensive strategies for improving outcomes for people with epilepsy. In this session, we’ll explore a comprehensive spectrum of preventable deaths associated with seizures and epilepsy.

Moderator: Daniel Friedman, MD, NYU Grossman School of Medicine

Speakers:

• Kelly Cervantes, Advocate, Author, and CURE Epilepsy Board Member
• 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, Icahn School of Medicine at Mount Sinai

Closing Plenary: Moving Towards Prevention of SUDEP

Over the past 15 years, our understanding of SUDEP has shifted.  Where we once thought of SUDEP as a rare & incurable phenomenon, we now understand it as a key driver of premature epilepsy mortality with opportunities for prevention.  This session will explore a range of opportunities and interventions – from clinical & basic science approaches to advanced use of technology – that seek to drive the prevention of sudden death in epilepsy.

• 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 and Alfred Health
  • Ingo Helbig, MD, Children’s Hospital of Philadelphia
  • Daniel Goldenholz, MD, PhD, MHSc, Harvard Beth Israel Deaconess Medical Center

Conference goals:

• Critically evaluate the incidence, risk factors, and prevention strategies for mortality in epilepsy
• Describe the progress made and future directions for research regarding mortality in epilepsy
• Provide opportunities for networking and collaboration among stakeholders, including people with epilepsy, researchers, families, clinicians, and advocates
• To be a welcoming gathering place of comfort and information for those who have lost a loved one
• Gain skills in advocacy to build public awareness and impact public policy regarding epilepsy mortality
• Encourage early-career investigators to study causes of mortality in epilepsy

SPONSORS

Thank you to our sponsors. Their generous support makes PAME’s conference possible. A portion of the 2023 education program is supported by medical education grants from UCB and Jazz Pharmaceuticals.