PAME Conference Overview
This year’s PAME conference will be held in Orlando, Florida, on Thursday, November 30that the Rosen Centre Hotel. We will also hold a special session for bereaved families and advocates on Wednesday, November 29th, the day before the conference. A welcome reception for all conference attendees follows that evening.
If you plan to attend PAME and the AES Annual Meeting, please register through the AES Annual Meeting Registration website. Registration to attend PAME in person is $150 for clinical and science professionals, $50 for trainees, and $50 for advocates/family members. Please see the AES Annual Meeting website for AES Annual Meeting registration rates.
If you plan to attend only the PAME conference in person, please email PAME@aesnet.org for instructions on how to register.
The PAME Planning Committee is pleased to share the preliminary conference agenda. The agenda is subject to change.
Wednesday, November 29th, 2023 – Family and Advocate Session
|2:30 – 5:30 pm||Welcome Remarks + Family Story
|Panel Discussion: Current SUDEP Research Updates
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.
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.
|Panel Discussion: Turning Grief into Action
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.
|6:30 – 8:00 pm||Reception to welcome all conference attendees|
Thursday, November 30th, 2023
|7:00 – 8:00 am||Breakfast & Registration|
|8:00 – 8:20 am||Welcome – PAME Co-chairs|
|8:20 – 9:00 am||Keynote Speaker
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.
|9:00 – 10:30 am||Plenary 1: All-cause Epilepsy Mortality
|10:30 – 10:45 am||Break|
|10:45 – 12:15 pm||Breakouts
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.
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.
|12:15 – 1:15 pm||Lunch & Scientist Networking
|1:30 – 3:00 pm||Breakouts
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.
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.
|3:00 – 3:15 pm||Break|
|3:30 – 5:00 pm||Plenary 2: Moving Towards Prevention of SUDEP
|4:45 – 5:00 pm||Closing Session|
|5:00 – 6:30 pm||Poster Tour & Reception|
Danny Did Foundation Travel Assistance:
If you would like to attend the PAME Conference & Family Session and you require financial assistance with travel costs, please contact firstname.lastname@example.org to complete an application to be considered for a reimbursement grant of up to $1,500.
Remembering loved ones lost to SUDEP or other epilepsy-related causes
Have you lost a loved one to SUDEP or another epilepsy-related cause? Consider submitting their picture and a short memory for the Conference Memory Wall and PAME’s Virtual Memory Wall on Facebook. The shared pictures and memories will serve as a collective remembrance and a visual way to call for increased urgency in our work. Please submit a picture and a memory by November 17th, and email email@example.com with questions. You do not need to attend the conference in order to submit a picture and memory.
- 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
Thank you to our sponsors. Their generous support makes PAME’s conference possible. Are you interested in sponsoring PAME? Contact Anne Gramiak at PAME@aesnet.org.