The Project Sleep Podcast

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Project Sleep is a 501(c)(3) non-profit organization dedicated to raising awareness and advocating for sleep health, sleep equity, and sleep disorders. The Project Sleep Podcast is hosted by our President.& CEO, Julie Flygare. We’re glad you’re here as we

Project Sleep


    • Mar 16, 2023 LATEST EPISODE
    • monthly NEW EPISODES
    • 45m AVG DURATION
    • 32 EPISODES


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    Latest episodes from The Project Sleep Podcast

    Alida Abdullah's Story with Sleep Apnea - Sleep Insights Series Ep. 5

    Play Episode Listen Later Mar 16, 2023 36:44


    If you tell your doctor that you’re tired all the time, would they take you seriously? What if you said you’re snoring? In this podcast, we talk to Alida Abdullah about finding her sleep apnea diagnosis, getting treatment, and what she wishes she’d known earlier in her journey. We also discuss a challenge many of us face: how to balance a busy lifestyle as a mom and teacher while also prioritizing her treatment and sleep. Alida Abdullah is a wife, mother of four, and teacher living in the Atlanta area. She was initially diagnosed with sleep apnea over 10 years ago, but didn’t understand the severity of the disorder until more recently, when she learned of the many other health issues that sleep apnea can cause. Alida is sharing her story to help raise awareness of under-diagnosed but serious sleep conditions like sleep apnea and how they can affect other areas of people’s lives. This discussion was originally recorded in July 2020.

    What's Light Got to Do with It? with Dr. Till Roenneberg - Sleep Insights Series Ep. 4

    Play Episode Listen Later Mar 6, 2023 24:39


    How much light did you get today? In this fascinating episode, we speak with Dr. Till Roenneberg, a Professor of Chronobiology for the Institute of Medical Psychology at Ludwig-Maximilian University in Munich, Germany. Dr. Roenneberg explains how powerful light and darkness are in setting our internal clocks and how industrialization has shifted how we use light. We discuss how variable our internal clocks can be and the importance of figuring out if you’re a lark, owl, dove, or peacock. This discussion was originally recorded as part of Project Sleep's annual Sleep In 2021 event in March 2021. Learn more: https://project-sleep.com/sleepin/

    germany professor sleep institute munich chronobiology ludwig maximilian university medical psychology project sleep till roenneberg
    Your Environment & Sleep Disparities with Dr. Dayna Johnson - Sleep Insights Series Ep. 3

    Play Episode Listen Later Feb 17, 2023 20:37


    When talking about creating a healthy sleep environment, we often assume that things like light, temperature, safety, and our sleep schedules are all within our personal control. In this episode, Dr. Dayna Johnson talks about important and under-discussed factors influencing people’s ability to get a good night’s sleep and how policies can shape our individual behaviors, sleep, and overall health. Dr. Dayna Johnson, PhD, is an Assistant Professor of Epidemiology at Rollins School of Public Health at Emory University in Atlanta, Georgia. Dr. Johnson’s research has uncovered much about the social contributors to racial and gender disparities in sleep by assessing the effects of social, household-level and neighborhood-level factors in correlation with insufficient sleep. This discussion was originally recorded as part of Project Sleep's annual Sleep In 2021 event in March 2021. Learn more: https://project-sleep.com/sleepin/

    Sleep, Race, & Health Disparities - Sleep Insights Series Ep. 2

    Play Episode Listen Later Feb 6, 2023 23:00


    What is the connection between sleep, race, ethnicity, and health disparities? What is being done to reduce these disparities? In this episode, Dr. Michael Grandner provides an overview of sleep health disparities research. Next, Dr. Carmela Alcántara highlights a community engagement sleep intervention in the Spanish-speaking LatinX population. Dr. Michael Grandner is a licensed clinical psychologist, Director of the Sleep and Health Research Program at the University of Arizona, and Director of the Behavioral Sleep Medicine Clinic at the Banner-University Medical Center in Tucson, AZ. His work focuses on translational sleep research and Behavioral Sleep Medicine. Dr. Carmela Alcántara is an Associate Professor of Social Work at Columbia School of Social Work. She is a clinical psychological scientist with additional expertise in social epidemiology and behavioral medicine. This discussion was recorded in October 2020, during Project Sleep’s Sleep Advocacy Forum. Learn more: project-sleep.com/watch-now-highlights-from-inaugural-sleep-advocacy-forum-2020/

    Teens & Sleep with Dr. Afolabi-Brown - Sleep Insights Series Ep. 1

    Play Episode Listen Later Jan 23, 2023 44:37


    If you’ve ever spent time around teenagers, you probably know that many teens are struggling with sleep. In fact, nearly 70 percent of high school students sleep less than the recommended 8-9 hours a night. In this podcast, we talk to Dr. Funke Afolabi-Brown about how we can make sleep cool to teens and their parents too! Dr. Afolabi-Brown is board-certified in pediatric pulmonary medicine and pediatric sleep disorders. As a double board-certified pediatric respiratory sleep medicine physician, Dr. Brown helps her patients breathe better and sleep better. By extension, she helps improve the sleep of their parents. Dr. Brown is a speaker, an educator, a writer, and the founder of Restful Sleep MD and also a member of Project Sleep's Expert Advisory Board. Find her on Instagram: @restfulsleepmd or her website: https://www.restfulsleepmd.com/ This conversation was recorded in March 2022, during Project Sleep’s annual Sleep In event to help society make peace with sleep. Learn more: https://project-sleep.com/sleepin/

    sleep teens project sleep
    Sleep Paralysis + Hallucinations II Narcolepsy Nerd Alert Series Ep. 16

    Play Episode Listen Later Dec 19, 2022 44:35


    With sleep paralysis and hypnagogic and hypnopompic hallucinations, the lines between sleeping and waking can be blurred. In this episode, we talk with three incredible narcolepsy advocates about these underappreciated, often terrifying, and confusing symptoms and how to cope with them. About Our Guests: Chelsea Cataldi is a world traveler who enjoys creating things with her hands. She was diagnosed with type 1 narcolepsy with cataplexy in 2010 while living in Japan. As a speaker with Project Sleep’s Rising Voices program, Chelsea raises awareness to combat misperceptions about narcolepsy and let others know they’re not alone. Kistyn Beecher is a storyteller and news producer from Houston, Texas. She was diagnosed with type 2 narcolepsy without cataplexy at age 24, but lived with symptoms for many years before that. A graduate of Hampton University and Rising Voices speaker, Kristyn works daily to make sure underrepresented voices are heard and their stories shared. Connor Baker is a CDU nurse working at Rush Copley Medical Center in Aurora, Illinois. He was diagnosed with type 1 narcolepsy with cataplexy at 20 years old. Connor shares his story as a Rising Voices speaker to spread awareness and end stigmas surrounding narcolepsy. Sleep Paralysis + Hallucinations Toolkit coming soon! The Narcolepsy Nerd Alert series invites listeners to dive deeper into specific topics relevant to living with narcolepsy. project-sleep.com/narcolepsy-nerd-alert/

    Narcolepsy at Work II Narcolepsy Nerd Alert Series Ep. 15

    Play Episode Listen Later Oct 31, 2022 48:26


    Navigating the workplace with narcolepsy can be intimidating. When should you bring up narcolepsy? What kinds of work accommodations are helpful and also reasonable to ask for? In this episode, we bring together a wonderful panel to discuss working in a variety of settings while living with narcolepsy. About Our Guests: Tre Burge is a proud Iowa native and paraprofessional working with elementary school students with disabilities. He was diagnosed with narcolepsy type 1 at age 18, and is a trained speaker with Rising Voices. Lindsey Kizer is from Belmont, NC and leads her workplace’s Chronic Illness and Disabilities employee group. She was diagnosed with narcolepsy type 1 at 29 and is a trained speaker with Rising Voices. Nicole Zamary is a Human Resources professional at the University of West Florida. She was diagnosed with narcolepsy type 2 at the age of 44, and is a trained speaker with Rising Voices. Narcolepsy at Work Toolkit coming soon! The Narcolepsy Nerd Alert series invites listeners to dive deeper into specific topics relevant to living with narcolepsy. project-sleep.com/narcolepsy-nerd-alert/

    Types of Narcolepsy II Narcolepsy Nerd Alert Series Ep. 14

    Play Episode Listen Later Oct 24, 2022 46:52


    What distinguishes narcolepsy type 1, type 2, and idiopathic hypersomnia? Can your diagnosis change? In this episode, we speak with Dr. Chad Ruoff about the latest research and perspectives on this topic. About Our Guest: Chad Ruoff, M.D., is an internal medicine physician specializing in sleep medicine. He is active in research and education and has authored numerous publications in sleep medicine on topics including sleep apnea and narcolepsy. The Narcolepsy Nerd Alert series invites listeners to dive deeper into specific topics relevant to living with narcolepsy. project-sleep.com/narcolepsy-nerd-alert/

    Narrating Narcolepsy II Narcolepsy Nerd Alert Series Ep. 13

    Play Episode Listen Later Oct 10, 2022 45:35


    Storytelling is so powerful. In this episode, we speak with two amazing fellow authors who wrote books about narcolepsy, Claire Crisp and Henry Nicholls. Together, we share some behind-the-scenes stories and tips for aspiring writers. About Our Guests: Claire Crisp is an award-winning author of Waking Mathilda—A Memoir of Childhood Narcolepsy which charts her family’s heart-wrenching journey to find an accurate diagnosis and then move from the UK to the USA in search of life changing treatment for their youngest child, Mathilda. HenryNicholls is a teacher, science journalist, and author, and his book Sleepyhead: The Neuroscience Of A Good Night’s Rest explores the neuroscience of sleep and the impact sleep disorders have on physical and mental health. And of course, your host, Julie Flygare, author of Wide Awake and Dreaming: A Memoir of Narcolepsy which tracks Julie’s journey developing and adjusting to narcolepsy in her early twenties while in law school, from collapsing to the ground to the start line of the Boston Marathon. Book Links: Waking Mathilda—A Memoir of Childhood Narcolepsy: https://www.amazon.com/Waking-Mathilda-Memoir-Childhood-Narcolepsy-ebook/dp/B06W584QT6/ref=sr_1_1?crid=MBLAJKFC3P31 Sleepyhead: The Neuroscience Of A Good Night’s Rest: https://www.amazon.com/Sleepyhead-Neuroscience-Good-Nights-Rest/dp/1541672577/ Wide Awake and Dreaming: A Memoir of Narcolepsy: https://www.amazon.com/Wide-Awake-Dreaming-Memoir-Narcolepsy/dp/0988314908 Download the Narrating Narcolepsy Toolkit for more resources: bit.ly/narrating-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/

    Health Insurance 101 II Narcolepsy Nerd Alert Series Ep. 12

    Play Episode Listen Later Oct 3, 2022 42:56


    If you’ve ever felt like navigating health insurance is a full-time job, you’re not alone. Today, we speak to Megan Donnell about healthcare coverage and resources. About Our Guest: Megan Donnell is a passionate advocate for those living with rare disorders and also has over 20 years of professional experience working in the healthcare and insurance benefits industry. Megan has two children in college, one of whom is living with idiopathic hypersomnia. Download the Health Insurance 101 Toolkit for more resources: bit.ly/health-insurance-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/

    Pregnancy + Narcolepsy II Narcolepsy Nerd Alert Series Ep. 11

    Play Episode Listen Later Sep 26, 2022 74:26


    If you’re interested in starting a family while living with narcolepsy, this podcast is for you. How might you manage medications or symptoms during pregnancy? What about adoption as an option? We brought together an incredible panel with so much real-life experience and insights, including people with narcolepsy who have walked this journey and an amazing clinician, Dr. Anne Marie Morse, to discuss and share. About Our Guests: DianaAnderson lives with narcolepsy type two and is the mother of a 4-year-old son. She also works full-time in physician assistant education. Emily Barker, PhD is a scientist living with narcolepsy with cataplexy and is the mom of three boys. Emily is also a co-facilitator for the Wake Up Narcolepsy Pregnancy and Parenting peer support group. Ashley Nutter, MEd is the mother of three children and a person living with narcolepsy with cataplexy. Ashley also has a Masters in Education Community Agency Counseling. Katie Williamsen is a mom to one daughter and a web designer living with narcolepsy with cataplexy. Michelle Zagardo is a photographer and teacher living with narcolepsy with cataplexy and the mother of a 6 month old daughter. Dr. Anne Marie Morse, DO is a board-certified and fellowship-trained pediatric neurologist specializing in sleep medicine at Geisinger Health System in Pennsylvania. Download the Pregnancy + Narcolepsy Toolkit for more resources: bit.ly/pregnancy-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/

    Pregnancy + Narcolepsy - Narcolepsy Nerd Alert Series Ep. 11

    Play Episode Listen Later Sep 26, 2022 74:26


    If you’re interested in starting a family while living with narcolepsy, this podcast is for you. How might you manage medications or symptoms during pregnancy? What about adoption as an option? We brought together an incredible panel with so much real-life experience and insights, including people with narcolepsy who have walked this journey and an amazing clinician, Dr. Anne Marie Morse, to discuss and share. About Our Guests: DianaAnderson lives with narcolepsy type two and is the mother of a 4-year-old son. She also works full-time in physician assistant education. Emily Barker, PhD is a scientist living with narcolepsy with cataplexy and is the mom of three boys. Emily is also a co-facilitator for the Wake Up Narcolepsy Pregnancy and Parenting peer support group. Ashley Nutter, MEd is the mother of three children and a person living with narcolepsy with cataplexy. Ashley also has a Masters in Education Community Agency Counseling. Katie Williamsen is a mom to one daughter and a web designer living with narcolepsy with cataplexy. Michelle Zagardo is a photographer and teacher living with narcolepsy with cataplexy and the mother of a 6 month old daughter. Dr. Anne Marie Morse, DO is a board-certified and fellowship-trained pediatric neurologist specializing in sleep medicine at Geisinger Health System in Pennsylvania. Download the Pregnancy + Narcolepsy Toolkit for more resources: bit.ly/pregnancy-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/

    Narcolepsy Around the World - Narcolepsy Nerd Alert Series Ep. 10

    Play Episode Listen Later Sep 19, 2022 56:39


    Every year, we raise awareness and celebrate our international community on World Narcolepsy Day, Sept. 22nd. In this episode, you’ll hear incredible stories from people living with narcolepsy in China, Australia, Poland, Germany, Israel, Angola, and Brazil. You’ll find that our experiences are more similar than we imagined. We may be spread out over many continents and time zones, but we are connected in very profound ways around the world. Download the Narcolepsy Around the World Toolkit for more resources: bit.ly/narcolepsy-around-the-world-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/

    Narcolepsy Around the World II Narcolepsy Nerd Alert Series Ep. 10

    Play Episode Listen Later Sep 19, 2022 56:39


    Every year, we raise awareness and celebrate our international community on World Narcolepsy Day, Sept. 22nd. In this episode, you’ll hear incredible stories from people living with narcolepsy in China, Australia, Poland, Germany, Israel, Angola, and Brazil. You’ll find that our experiences are more similar than we imagined. We may be spread out over many continents and time zones, but we are connected in very profound ways around the world. Download the Narcolepsy Around the World Toolkit for more resources: bit.ly/narcolepsy-around-the-world-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/

    Science of Narcolepsy II Narcolepsy Nerd Alert Series Ep. 9

    Play Episode Listen Later Sep 12, 2022 41:52


    We’re joined by renowned narcolepsy expert, Dr. Thomas Scammell to answer all your questions about the science of narcolepsy. What causes narcolepsy? Is it genetic or are there environmental factors? What are orexins or hypocretin? And how does losing these neurotransmitters impair the wake-promoting systems? About Our Guest: Dr. Thomas Scammell is a Professor in Neurology at Harvard Medical School, Beth Israel Deaconess Medical Center, and Boston Children’s Hospital. He has published over 150 journal articles and chapters and lectured around the world on narcolepsy and the neurobiology of sleep and wakefulness. Download the Science of Narcolepsy Toolkit for more resources: bit.ly/science-of-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/

    Science of Narcolepsy - Narcolepsy Nerd Alert Series Ep. 9

    Play Episode Listen Later Sep 12, 2022 41:52


    We’re joined by renowned narcolepsy expert, Dr. Thomas Scammell to answer all your questions about the science of narcolepsy. What causes narcolepsy? Is it genetic or are there environmental factors? What are orexins or hypocretin? And how does losing these neurotransmitters impair the wake-promoting systems? About Our Guest: Dr. Thomas Scammell is a Professor in Neurology at Harvard Medical School, Beth Israel Deaconess Medical Center, and Boston Children’s Hospital. He has published over 150 journal articles and chapters and lectured around the world on narcolepsy and the neurobiology of sleep and wakefulness. Download the Science of Narcolepsy Toolkit for more resources: bit.ly/science-of-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/

    Navigating School with Narcolepsy - Narcolepsy Nerd Alert Series Ep. 8

    Play Episode Listen Later Sep 5, 2022 50:29


    Students with sleep disorders have the right to an equitable education, but how do you work with your school and doctor to get accommodations? And what accommodations should you ask for? We're joined by two amazing women and Jack & Julie Narcolepsy Scholarships recipients, Kenya Gradnigo and Danielle Brooks, to discuss navigating school with narcolepsy. About Our Guests: Danielle Brooks was diagnosed with type 1 narcolepsy with cataplexy during her freshman year of high school. Danielle recently graduated with a Master of Science in communication sciences and disorders, and is now working as a school speech language pathologist. Kenya Gradnigo was diagnosed with type 1 narcolepsy with cataplexy when she was eight years old. Kenya recently secured her Master of Social Work degree and is now working in the mental health social work space. She’s also a member of Project Sleep’s board of directors. Download the Navigating School with Narcolepsy Toolkit for more resources: bit.ly/navigating-school-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/

    Navigating School with Narcolepsy II Narcolepsy Nerd Alert Series Ep. 8

    Play Episode Listen Later Sep 5, 2022 50:29


    Students with sleep disorders have the right to an equitable education, but how do you work with your school and doctor to get accommodations? And what accommodations should you ask for? We're joined by two amazing women and Jack & Julie Narcolepsy Scholarships recipients, Kenya Gradnigo and Danielle Brooks, to discuss navigating school with narcolepsy. About Our Guests: Danielle Brooks was diagnosed with type 1 narcolepsy with cataplexy during her freshman year of high school. Danielle recently graduated with a Master of Science in communication sciences and disorders, and is now working as a school speech language pathologist. Kenya Gradnigo was diagnosed with type 1 narcolepsy with cataplexy when she was eight years old. Kenya recently secured her Master of Social Work degree and is now working in the mental health social work space. She’s also a member of Project Sleep’s board of directors. Download the Navigating School with Narcolepsy Toolkit for more resources: bit.ly/navigating-school-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/

    Napping + Narcolepsy - Narcolepsy Nerd Alert Series Ep. 7

    Play Episode Listen Later Aug 29, 2022 33:20


    Is napping an unwelcome symptom of narcolepsy or a helpful treatment? In today’s episode, we speak with Dr. Luis Ortiz and Mary Murray about how we make space for naps in our busy daytime lives, especially in a culture where sleeping is laziness or weakness. About our Guests: Luis E. Ortiz, MD is a pediatric sleep specialist at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida. Living with narcolepsy himself, Dr. Ortiz offers invaluable insights from both a medical perspective and first-hand lived experience. Mary Murray is a teacher and mother living with idiopathic hypersomnia in Los Angeles, CA. Mary is also a Rising Voices of Narcolepsy advocate and her powerful essay “Nap Roulette” is published on Project Sleep’s website. Download the Napping + Narcolepsy Toolkit for more resources: bit.ly/napping-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/

    Napping + Narcolepsy II Narcolepsy Nerd Alert Series Ep. 7

    Play Episode Listen Later Aug 29, 2022 33:20


    Is napping an unwelcome symptom of narcolepsy or a helpful treatment? In today’s episode, we speak with Dr. Luis Ortiz and Mary Murray about how we make space for naps in our busy daytime lives, especially in a culture where sleeping is laziness or weakness. About our Guests: Luis E. Ortiz, MD is a pediatric sleep specialist at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida. Living with narcolepsy himself, Dr. Ortiz offers invaluable insights from both a medical perspective and first-hand lived experience. Mary Murray is a teacher and mother living with idiopathic hypersomnia in Los Angeles, CA. Mary is also a Rising Voices of Narcolepsy advocate and her powerful essay “Nap Roulette” is published on Project Sleep’s website. Download the Napping + Narcolepsy Toolkit for more resources: bit.ly/napping-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/

    Narcolepsy Goes to Hollywood - Narcolepsy Nerd Alert Series Ep. 6

    Play Episode Listen Later Aug 22, 2022 49:09


    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/

    Narcolepsy Goes to Hollywood II Narcolepsy Nerd Alert Series Ep. 6

    Play Episode Listen Later Aug 22, 2022 49:09


    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/

    Friends + Family + Narcolepsy - Narcolepsy Nerd Alert Series Ep. 5

    Play Episode Listen Later Aug 15, 2022 38:47


    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/

    director board nerds friends family narcolepsy nerd alert lauren thomas anne taylor project sleep
    Friends + Family + Narcolepsy II Narcolepsy Nerd Alert Series Ep. 5

    Play Episode Listen Later Aug 15, 2022 38:47


    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/

    director board nerds friends family narcolepsy nerd alert lauren thomas anne taylor project sleep
    Narcolepsy & Brain Fog - Narcolepsy Nerd Alert Series Ep. 4

    Play Episode Listen Later Aug 8, 2022 36:04


    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/

    Narcolepsy & Brain Fog II Narcolepsy Nerd Alert Series Ep. 4

    Play Episode Listen Later Aug 8, 2022 36:04


    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/

    Becoming a Narcolepsy Advocate - Narcolepsy Nerd Alert Series Ep. 3

    Play Episode Listen Later Aug 1, 2022 64:50


    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/

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    Becoming a Narcolepsy Advocate II Narcolepsy Nerd Alert Series Ep. 3

    Play Episode Listen Later Aug 1, 2022 64:50


    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/

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    New + Upcoming Narcolepsy Treatments - Narcolepsy Nerd Alert Series Ep. 2

    Play Episode Listen Later Jul 25, 2022 49:43


    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/

    New + Upcoming Narcolepsy Treatments II Narcolepsy Nerd Alert Series Ep. 2

    Play Episode Listen Later Jul 25, 2022 49:43


    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/

    Narcolepsy Roadmap - Narcolepsy Nerd Alert Series Ep. 1

    Play Episode Listen Later Jul 16, 2022 36:37


    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 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/

    Narcolepsy Roadmap II Narcolepsy Nerd Alert Series Ep. 1

    Play Episode Listen Later Jul 16, 2022 36:37


    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 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/

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