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Upcoming Brown Bag Webinars

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.

Thank you to our 2024 sponsors:

    

   

August 8, 2024 – 2pm ET – Social Security Disability for People with Narcolepsy

by Angel Burgess, JD

Join WUN as Angel Burgess, JD shares her extensive knowledge of the Social Security Disability system. Learn about the process, qualifications, other options and so much more. You don’t want to miss this session. Bring your questions!

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September 12, 2024 – 2pm ET – Describing Narcolepsy Symptoms

by Debra Stultz, MD

Registration coming soon!

October 10, 2024 – 2pm ET 

Registration coming soon!

November 14, 2024 – 2pm ET 

Registration coming soon!

Previous Webinars

May 9, 2024 — Narcolepsy Diagnostic Journey

with Anthony Izzo, DO & Jason Todd, MD

Hear Anthony Izzo, DO & Jason Todd, MD, person with Narcolepsy, share about the journey to a Narcolepsy diagnosis. Learn the purpose of different tests, what the diagnostic criteria is, why it can take time to get a diagnosis and what to do after receiving one.

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April 24, 2024 — Canada: Narcolepsy Medications & Access to Care

with Laurel Charlesworth, MD & Kelsey Bingham

This month, WUN is highlighting Narcolepsy medications and access to care in Canada with a special session presented by Laurel Charlesworth, MD & Kelsey Bingham, person with Narcolepsy.

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March 14, 2024 — Narcolepsy & Maternal Health

with Katie Sharkey, MD, PhD, FAASM, FACP, Ashley Starr Frechette, MPH (PWN) & Emily Clegg Barker, PhD (PWN)

Moderated by Kelsey Biddle, MD Candidate (PWN)

Navigating Narcolepsy & maternal health can be overwhelming. This important WUN discussion is here to help!

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February 8, 2024 —  Narcolepsy 101

by Thomas Scammell, MD

Dr. Scammell’s presentation is valuable for any person with Narcolepsy or a loved one, no matter what point you are in your journey.

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November 16, 2023 —  Taking Care of Your Mental Health: Strategies for People with Narcolepsy and Supporters, by Jennifer Mundt, PhD

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.

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October 12, 2023 — The Benefits of Proper Sleep Hygiene by Shelby Harris, PsyD, DBSM

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.

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September 14, 2023 — Narcolepsy Therapies, by Dr. Suzanne Stevens

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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

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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May 11, 2023 – 2pm ET — Access to Care & Patient Assistance for People with Narcolepsy

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.

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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.

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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

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.

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February 9, 2023 – Heart Health and Narcolepsy, by Dr. Michael Grandner

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.

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

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

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

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.

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

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.

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

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

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.

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

Panelists are Nicole Jeray, LPGA Tour Member, PWN, WUN Board Member and Heidi Stock, Creative Marketing Professional, PWN.

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