Livestream: The Life-long Care of Individuals with Lennox-Gastaut Syndrome: Strategies for Outcomes Optimization from Childhood Through Adulthood

Faculty

Elaine Wirrell, MD

Moderator

Professor and Chair

Child and Adolescent Neurology

Mayo Clinic

Rochester, MN

Tracy Dixon-Salazar, PhD

Patient Advocate

Executive Director

Lennox-Gastaut Syndrome (LGS) Foundation

San Diego, CA

Tracy Dixon-Salazar, PhD

Patient Advocate

Dr. Dixon-Salazar is a neuroscientist, geneticist, and patient advocate. Her desire to get her PhD was inspired by her daughter who developed Lennox-Gastaut Syndrome (LGS) at the age of 2. She completed her PhD and postdoctoral work at UC, San Diego, where she studied the mechanisms of brain development and synaptic plasticity, identified genetic causes of rare disorders in children, and researched precision therapeutics in stem cell and animal models of pediatric disease. During her research tenure, and after 16 years of watching daily, unrelenting seizures in her child, she uncovered the driver of her daughter’s illness and identified a novel precision therapy that improved her child’s life.

Dr. Dixon-Salazar left academia after 15 years in the lab with a drive to decrease the amount of time it would take for patients to benefit from lab discoveries in epilepsy precision medicine. She worked as Associate Research Director at CURE Epilepsy helping to move funding forward for novel translational research in genomic medicine for patients with severe forms of pediatric-onset epilepsy. She then transitioned to the Director of Research and Strategy at the Lennox-Gastaut Syndrome (LGS) Foundation where she worked directly with patients to access precision therapies and partnered with researchers, clinicians, regulators, policymakers, therapy developers, and other advocacy groups to build a sustainable precision medicine infrastructure for all patients with epilepsy. Currently, Dr. Dixon- Salazar serves as the Executive Director of the LGS Foundation, where the mission is to improve the lives of individuals impacted by LGS through advancing research, awareness, education, and family support

Bethany Thomas, DNP

Epilepsy Nurse Practitioner

Hospital of the University of Pennsylvania

Philadelphia, PA

Statement of Need

Lennox-Gastaut syndrome (LGS) remains a challenging condition to understand, diagnose, and manage. Neuroscience/neurology clinicians, including nurses and nurse practitioners (NPs), encounter significant challenges in the management of patients with LGS, due to the severe symptoms and morbidities, diagnostic delays, and therapeutic barriers involved with the condition. Patients with LGS need interdisciplinary collaborative care that includes optimal and long-term management plans to minimize disease burden and maximize quality of life (QoL) over the lifespan.

In this CME Outfitters livestream symposium, expert faculty will discuss the disease burden and impact of LGS on QoL for patients and caregivers, the utilization of diagnostic criteria and distinguishing features of both early- and late-onset LGS to achieve early and accurate diagnosis, and strategies to optimize LGS management across the lifespan of these patients.

Learning Objectives

At the conclusion of this activity, learners will be able to better:

Evaluate the disease burden and impact of LGS on QoL for both patients and caregivers
Utilize diagnostic criteria and distinguishing features of both early- and late-onset LGS to achieve early and accurate diagnosis in all patients
Develop strategies to optimize management of LGS across patients’ lifespans

Financial Support

This program is supported by an independent medical education grant from Jazz Pharmaceuticals

Target Audience

Neuroscience nurse practitioners (NPs) and nurses

Credit Information

Jointly Accredited Provider

In support of improving patient care, CME Outfitters, LLC, is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC) to provide continuing education for the healthcare team.

Nurses (ANCC) 1.0

This activity is designated for 1.00 contact hours.

California Residents: This continuing nursing education activity was approved by the California Board of Registered Nursing. CME Outfitters, LLC’s provider number is CEP15510.

Disclosure Declaration

Dr. Wirrell reports the following financial relationships:

Advisory Board: Jazz Pharmaceuticals, Inc. and Longboard Pharmaceuticals

Consultant: Data Safety and Monitoring Boards (DSMB): Acadia Pharmaceuticals Inc.; Amicus Therapeutics, Inc.; Encoded Therapeutics, Inc.; GRIN Therapeutics; Longboard Pharmaceuticals; and Neurocrine Biosciences, Inc.

Research Support: Takeda Pharmaceutical Company Limited/Ovid Therapeutics Inc. (Site Principal investigator for OVID935 in DEEs)

Dr. Dixon-Salazar reports no financial relationships to disclose.

Dr. Thomas reports the following financial relationships:

Advisory Board: Jazz Pharmaceuticals, Inc.; Neurelis, Inc.; and SK Life Science, Inc.

Consultant: Jazz Pharmaceuticals, Inc. and SK Life Science, Inc.

Speakers Bureau: Jazz Pharmaceuticals, Inc.; Neurelis, Inc.; and SK Life Science, Inc.

The following individuals have no financial relationships to disclose:

Thai Nguyen, MD, MHA (Peer Reviewer)
Shirley Michelle Franks, MSN, APRN, FNP-BC (Peer Reviewer)
Susan Perry (Planning Committee)
Chelsey Goins, PhD (Planning Committee)
Scott J. Hershman, MD, FACEHP, CHCP (Planning Committee)
Sandra Caballero, PharmD (Planning Committee)
Sharon Tordoff (Planning Committee)

Questions about this activity?

Call us at 877.CME.PROS (877.263.7767).

MMS-146-031625-43