Brown Bag Webinars

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Join WUN for a monthly Brown Bag Webinar Series beginning in February for these informative sessions and listen to experts sharing information on various topics of narcolepsy. Please Note: Pre-registration is required.

February 9, 2023 – 2pm ET — Heart Health and Narcolepsy, by Dr. Michael Grandner

Join us as we learn from Dr. Michael Grandner 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.

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March 9, 2023 – 2pm ET — Patient Voice – Newly Diagnosed with Narcolepsy, with PWN, Emily Barker, and Parent, Kimberly Cassidy, of PWN

Join Emily Barker, PWN, and Kimberly Cassidy, Parent of PWN and WUN Board Member, as they 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.

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April 13, 2023 – 2pm ET — Supporting the Transition from Pediatric Narcolepsy Care to Adult Narcolepsy Care, by Dr Kiran Maski, MD, MPH

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. Please join WUN for this important and informative discussion, with the opportunity for Q&A at the end.

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May 11, 2023 – 2pm ET — Patient Assistance & How to Navigate Insurance for People with Narcolepsy

Join NORD representatives Jill Pollander, RN, MSN Vice President of Patient Services, and Alicia Lawrence, LMSW, Information and Resource Services Manager, as they discuss the ins and outs of patient assistance programs and how to navigate insurance when seeking coverage for tests, treatments, and appointments. There will be time for Q&A so bring your questions.

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June 15, 2023 – 2pm ET — Understanding the Differences Between Narcolepsy Type 1, Type 2, and Idiopathic Hypersomnia, by Dr. Thomas Scammell, MD

Join WUN as 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.

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September 14, 2023 — Medications

 

October 12, 2023 — Clinical Trials

 

November 9, 2023 — Mental Health

 


Previous Webinars

 

December 8, 2022 – How to Speak with Your Provider, by Dr. Anne Marie Morse

Join WUN for this interesting and dynamic presentation by 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.

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November 10, 2022 – Understanding Comorbid Conditions with Narcolepsy, by Dr. Chad Rouff

Join us for an interesting topic – understanding comorbidities with narcolepsy. 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.

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October 13, 2022 – Are Clinical Trials Right for You? Dr. Russell Rosenberg, Elisha Stauffer, Mike PWN

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.

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September 8, 2022 – Current and New Narcolepsy Medications

Our September 8 webinar will focus on the topic “Current and New Narcolepsy Medications” with Dr. Luis Ortiz, a physician in the Sleep Center at Johns Hopkins All Children’s Hospital. Join WUN at an interactive session with Dr. Luis Ortiz as he presents on current and new narcolepsy medications. Take this opportunity to have all of your questions about narcolepsy medications answered. Dr. Ortiz will open to questions throughout this session.

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August 11, 2022 – Accommodations, School & Work for people with narcolepsy

Our August 11 webinar will focus on the topic “Accommodations, School & Work for people with narcolepsy” with our presenter, Amy Dougrey. Amy 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.

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July 14, 2022 – What Are the WUN Virtual Support Groups?

Our July 14 webinar will focus on the topic “What Are the WUN Virtual Support Groups?” Join WUN to 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.

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June 9, 2022 – Behavioral Treatments & Mental Health Strategies for People Living with Narcolepsy

Our June 9 webinar will focus on the topic “Behavioral Treatments & Mental Health Strategies for People Living with Narcolepsy.” Our panelists are Jason Ong, PhD and Shelby Harris, PsyD, DBSM.

Join WUN and the community and listen to leading experts, Dr. Ong and Dr. Harris, as they assist people with narcolepsy in navigating the mental health and behavioral challenges while managing their medical disorder. There will be a Q&A section at the end of the session.

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June 2, 2022 – Narcolepsy Journey: Tips & Tricks to Living with Narcolepsy

Our June 2 webinar will focus on the topic “Narcolepsy Journey: Tips & Tricks to Living with Narcolepsy.” Our panelists are Nicole Jeray, LPGA Tour Member, PWN, WUN Board Member and Heidi Stock, Creative Marketing Professional, PWN.

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