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Join WUN’s monthly Brown Bag Webinar Series for informative sessions with experts discussing various topics related to narcolepsy. Please Note: Pre-registration is required.
Dr. Jennifer Mundt, PhD and Sleep Psychologist, talks about the important role that mental health plays in managing Narcolepsy. She discusses ways to care for your mental health, including strategies for people with Narcolepsy and supporters.
Dr. Shelby Harris, Behavioral Sleep Medicine expert, explains the components of proper sleep hygiene, its benefits for individuals with Narcolepsy and discusses ways to improve sleep regimens. Learn how behavioral and environmental factors affect your sleep and what you can do to get your best night’s sleep.
Dr. Thomas Scammell explains the differences between NT1, NT2 and IH. While these sleep disorders have many commonalities, they deserve to be understood individually so that patients can receive the best treatment and therapies available for their specific diagnosis. In this presentation, Dr. Scammell will help us understand their shared and unique symptoms, characteristics and causes. He will also discuss effective treatment and medication options for each.
NORD representatives Jill Pollander, RN, MSN Vice President of Patient Services, and Alicia Lawrence, LMSW, Information and Resource Services Manager discuss issues that affect access to care for people with rare diseases and the ins and outs of patient assistance programs.
Dr. Kiran Maski believes that it’s important to help pediatric patients understand the different aspects of their narcolepsy diagnosis to facilitate their future transition to adult care and to responsibly manage their own health needs. Dr. Maski will share age-appropriate medical definitions that patients can use when explaining narcolepsy and their symptoms, the diagnostic tests they may have participated in, and common treatments/therapies and how they work to improve symptoms. She will provide guidance on how these definitions and explanations should evolve as the child grows and include practical ways to help your child through this process.
Emily Barker, PWN, and Kimberly Cassidy, Parent of PWN and WUN Board Member, will share their narcolepsy journeys and how they received a diagnosis. They will discuss navigating a new narcolepsy diagnosis and share resources and tips and tricks that they found helpful at the beginning of their journeys. They will also share what they wish they had known or done. This will be a very informative discussion for anyone with narcolepsy and especially for those newly diagnosed with narcolepsy.
Dr. Michael Grandner will teach us about the importance of sleep and cardiovascular health. He will also discuss the unique heart health risks associated with narcolepsy, including stress and mental health, and the advantages and disadvantages of available therapeutic treatments.
Dr. Anne Marie Morse. Dr. Morse is a passionate advocate for people living with narcolepsy and will present about individual empowerment and activation in the journey with narcolepsy, focusing on how to speak with your provider.
Learn about the most frequent medical conditions that accompany narcolepsy. Dr. Chad Rouff provides all of the information to help make you aware of other medical conditions that people with narcolepsy may experience.
The narcolepsy space has several ongoing clinical trials and more to come in the near future. There is a need for the narcolepsy community to understand what is involved in participating in clinical trials. Watch and learn from the experts in this field: Russell Rosenberg, PhD, chief science officer and CEO of NeuroTrials Research, Elisha Stauffer, clinical research coordinator at Ohio Sleep Medicine Institute, and Mike, PWN who has undergone two clinical trials.
Dr. Luis Ortiz, a physician in the Sleep Center at Johns Hopkins All Children’s Hospital, will present on current and new narcolepsy medications, answering questions throughout the session.
Amy Dougrey is a Parent & Family Educator in the Neurology Department at Boston Children’s Hospital. With a master’s degree from Simmons College in Special Education: Moderate Disabilities PreK-8, and years working in public schools as a Special Educator/Case Manager, Amy helps families navigate the education system; consulting on a case-by-case basis and working with patients who have an array of disabilities. In addition to her work in several clinics within the Neurology Department, Amy assists in the BACPAC Program (Bullying and Cyberbullying Prevention and Advocacy Collaborative) with Neurologist Dr. Peter Raffalli as an Educational Consultant.
Learn about this amazing free resource. Our panelists are Matthew Horsnell, Narcolepsy Advocate, WUN Support Group Leader, Tara O’Connor, WUN Teen Support Group Leader, College Student, PWN, Sheila Coutts, WUN Canadian Support Group Leader and Sara Wolf, Pregnancy and Parenting Group Leader.
Panelists are Jason Ong, PhD and Shelby Harris, PsyD, DBSM.
Dr. Ong and Dr. Harris assist people with narcolepsy in navigating the mental health and behavioral challenges while managing their medical disorder.
Panelists are Nicole Jeray, LPGA Tour Member, PWN, WUN Board Member and Heidi Stock, Creative Marketing Professional, PWN.