Navigating narcolepsy doesn’t come with a roadmap, but it should. What do you wish you’d known at diagnosis? In this episode, we break down the narcolepsy journey into the medical experience, social experience and internal experience.

Download the Narcolepsy Roadmap Toolkit: https://bit.ly/narcolepsy-roadmap-toolkit

It’s no secret that the prospect of novel narcolepsy treatment options gives hope to many people living with narcolepsy. In this episode, we speak with Dr. Anne Marie Morse to discuss current treatment options, what’s on the horizon in drug development, and how people with narcolepsy can get involved by participating in clinical trials.

About Our Guest:

Dr. Anne Marie Morse is a board-certified and fellowship-trained pediatric neurologist specializing in sleep medicine at Geisinger Health System in Pennsylvania. She is certified by the American Board of Psychiatry and Neurology in neurology with special qualification in child neurology.

Download the New + Upcoming Narcolepsy Treatments Toolkit for more resources: bit.ly/new-upcoming-narcolepsy-treatments 

The Narcolepsy Nerd Alert series invites listeners to dive deeper into specific topics relevant to living with narcolepsy. https://project-sleep.com/narcolepsy-nerd-alert/

So you’d like to advocate for narcolepsy, but aren’t sure where to start? In this episode, we are joined by two incredible narcolepsy advocates, Ana E. Lara and Matthew Horsnell. Together, we talk about the power of YOUR story and break down narcolepsy advocacy into three categories: self-advocacy, raising your voice publicly, and legislative advocacy.

Ana E. Lara is a poet and stay-at-home mom who is passionate about writing. She is a person with narcolepsy, who advocates for sleep health and serves on the board of directors for Project Sleep. 

Matthew Horsnell is a father of three and science nerd living with type 1 narcolepsy with cataplexy. He is a Rising Voices of Narcolepsy trained speaker and a facilitator for Wake Up Narcolepsy online small groups.

Download the Becoming a Narcolepsy Advocate Toolkit for more resources: https://bit.ly/becoming-a-narcolepsy-advocate 

The Narcolepsy Nerd Alert series invites listeners to dive deeper into specific topics relevant to living with narcolepsy. https://project-sleep.com/narcolepsy-nerd-alert/

Is brain fog a symptom of narcolepsy? In this episode, we talk with pediatric sleep neurology expert, Dr. Kiran Maski and Rising Voices trained speaker, Shannon Burkoth about some more invisible and under-recognized aspects of living with narcolepsy, including Brain Fog or Mental Fogginess, Automatic Behavior, Micro-sleeps, and Mood Instability. We also discuss current research and tips for managing and communicating about Brain Fog.

About Our Guests:

Shannon Burkoth was diagnosed with Narcolepsy Type 1 in 2010. She has been a trained speaker with the Rising Voices program since 2017, and advocates for both narcolepsy and rare disease.

Dr. Kiran Maski is a sleep medicine physician at Boston Children's Hospital specializing in narcolepsy and sleep problems of children. She is also a sleep researcher, and her work on improving the diagnosis of narcolepsy has been published in SLEEP, the official journal of the Sleep Research Society.

Download the Narcolepsy & Brain Fog Toolkit for more resources: bit.ly/brain-fog-toolkit

The Narcolepsy Nerd Alert series invites listeners to dive deeper into specific topics relevant to living with narcolepsy. https://project-sleep.com/narcolepsy-nerd-alert/

How can I get my friends and family to understand narcolepsy? It can be hard to know how to explain narcolepsy and ask for help. And even the most thoughtful friends and family members may not be sure how best to support the person with narcolepsy’s experience. We’ve enlisted two amazing narcolepsy advocates and dear friends, Lauren Thomas and Anne Taylor, to discuss this important topic.

About Our Guests:

Lauren Thomas is a person living with narcolepsy with cataplexy. She was diagnosed in 2019 after a long journey with misdiagnosed sleepiness.

Anne Taylor is a nurse and mother of a daughter living with narcolepsy. Anne also serves on the Board of Directors for Project Sleep.

Download the Friends + Family + Narcolepsy Toolkit for more resources: bit.ly/friends-family-narcolepsy-toolkit

The Narcolepsy Nerd Alert series invites listeners to dive deeper into specific topics relevant to living with narcolepsy. project-sleep.com/narcolepsy-nerd-alert/

In this episode, we take a closer look at Hollywood’s portrayals of narcolepsy to better understand why they matter and how we can play a role in shaping future portrayals of narcolepsy in the entertainment industry. We are joined by Al Jean, the Executive Producer and head writer for The Simpsons, and Anna Marr, a Los Angeles-based actor, writer, and voiceover artist originally from Ohio.

About our Guests:

AL Jean has been working on The Simpsons for 32 years and has received nine Emmy awards and two Peabody Awards for his work on the show. He developed Season 27, Episode 1 of The Simpsons, when Homer Simpson is diagnosed with narcolepsy.

Anna Marr is the co-founder of Bluelaces Theater, a nonprofit organization that creates interactive multi-sensory theater for individuals with developmental disabilities. Anna developed a dark comedy short film called "Walking Through Peanut Butter" based on her experience navigating New York's comedy scene with narcolepsy. She is also a Rising Voices of Narcolepsy advocate who aims to change how the media represents this chronic neurological disorder.

Download the Narcolepsy Goes to Hollywood Toolkit for more resources: bit.ly/narcolepsy-goes-to-hollywood-toolkit

The Narcolepsy Nerd Alert series invites listeners to dive deeper into specific topics relevant to living with narcolepsy. project-sleep.com/narcolepsy-nerd-alert/