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Women & Caregiving: Supporting Children with Narcolepsy through School

July 15 @ 3:00 pm - 4:00 pm EDT

Narcolepsy is a chronic neurological disorder that affects the brain’s ability to control sleep-wake cycles, resulting in persistent and excessive daytime sleepiness and other symptoms. There are two types of narcolepsy: Type 1 that occurs with cataplexy (a sudden loss or activation of muscle tone) and Type 2, which does not.

More than half of individuals with narcolepsy have symptoms that start before the age 20 and go undiagnosed or misdiagnosed for many years. In children, this invisible illness is often misinterpreted as laziness, lack of motivation, behavioral problems, or cognitive difficulties. As a result, narcolepsy can have a significant impact on a child’s personal, social, and academic life. Women who are caregivers for a child living with narcolepsy are charged to advocate for their support and quality care in both the medical and school systems, hoping to lessen the burden of this disease on their family.

The Society for Women’s Health Research (SWHR) has created a fact sheet and other resources to assist women and caregivers of children with narcolepsy, as they navigate the educational system to provide support and possible accommodations for their child.

SWHR is hosting a webinar to share information about narcolepsy, including diagnosing, treating, and seeking academic accommodations for children, as well as highlight the experiences of women who are caregivers of children living with narcolepsy.

Register

Details

Date:
July 15
Time:
3:00 pm - 4:00 pm EDT
Event Categories:
, , ,
Website:
https://swhr-org.zoom.us/webinar/register/WN_NAHf0iKyR66UKIUxNnLOSg

Organizer

SWHR

Goals

  • Provide an overview of narcolepsy and key diagnostic criteria and treatment options, with a special emphasis on children
  • Highlight options and considerations for school accommodations for children living with narcolepsy
  • Share tips and opportunities for caregivers to find support and K-12 school accommodations for children living with narcolepsy

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Panelists

Anne Marie Morse, DO, FAASM

Director of Child Neurology and Pediatric Sleep Medicine, Janet Weis Children’s Hospital- Geisinger Health System

Anne Marie Morse, DO, FAASM

Director of Child Neurology and Pediatric Sleep Medicine, Janet Weis Children’s Hospital- Geisinger Health System

Dr. Anne Marie Morse is a board certified adult neurologist with special qualifications in child neurology and sleep medicine specialist. She is the Director of Child Neurology and Pediatric Sleep Medicine at Janet Weis Children’s Hospital – Geisinger Health System (Danville, Pennsylvania). She has significant clinical experience and interest in pediatric and adult patients with sleep wake disorders, particularly central disorders of hypersomnolence, such as narcolepsy. In addition, her research interests extend more broadly to include investigating the relationship of sleep with neurologic disease. Some of her current research involvement includes participation in studies evaluating novel therapies and management strategies for hypersomnia disorders, neurodevelopment and sleep, and neurocognitive outcomes related to sleep apnea. In addition, Dr. Morse’s commitment to sleep health also extends into the community. She has developed a school-based sleep education and surveillance program called Wake Up and LearnTM, a program developed to provide education about sleep health and perform school-based sleep screening to improve recognition of pediatric sleep disorders in middle and high school students. After successful implementation in middle school and high school, it has now expanded to include learners in college, medical school and medical residency programs as well. Dr. Morse envisions a world where sleep can be acknowledged as the vital sign of health, wellness, and performance that it is designed to be.

Erin S. Leichman, PhD, NCSP

Senior Research Psychologist, Saint Joseph’s University

Erin S. Leichman, PhD, NCSP

Senior Research Psychologist, Saint Joseph’s University

Dr. Erin Leichman is a senior research psychologist at Saint Joseph’s University in Philadelphia, PA. She is a licensed psychologist, a Diplomate in Behavioral Sleep Medicine (DBSM), and a Nationally Certified School Psychologist (NCSP). Currently, she focuses on research related to sleep in young children and their families. She is also the Executive Director of the Pediatric Sleep Council and serves as the primary editor of www.babysleep.com.

Dr. Leichman received her doctorate in School Psychology from Lehigh University in Bethlehem, PA with a concentration in pediatric school psychology, completing her internship at Louisiana State University Health Sciences Center in New Orleans, LA and postdoctoral clinical training at The Kennedy Krieger Institute at The Johns Hopkins University School of Medicine in Baltimore, MD.  She has worked as a school psychologist in public school systems, a special educator for children with developmental disabilities and Autism Spectrum Disorders, and a behavioral therapist for children with disruptive behavior disorders.

Tammy Anderson

Assistant Director, Wake Up Narcolepsy

Tammy Anderson

Assistant Director, Wake Up Narcolepsy

Tammy Anderson is the assistant director for Wake Up Narcolepsy and has spent most of her adult life helping build organizations that strengthen individuals and families. Prior to joining Wake Up Narcolepsy, Tammy worked as a development director at a nonprofit and as a student advocate in public, private and home education settings. Her passion for understanding and seeking optimal outcomes in human development, especially within the context of family life and relationships, began at an early age, but gained focus during her studies and graduation from Brigham Young University, where she earned a degree in marriage, family and human development, with licensure as a Family Life Educator. When her daughter was diagnosed with Narcolepsy at age 10, Tammy and her husband set out to find answers, treatments, therapies and ways that their daughter could live the fullest life possible. Wake Up Narcolepsy has played a critical part of their journey. Living in the foothills of Northern Utah, Tammy and her family enjoy hiking and exploring in the mountains near their home. Her family is her greatest work and accomplishment.

Sponsor

Support for this educational program has been provided by Harmony Biosciences. SWHR maintains independence and editorial control over program development, content, and work products.