The Project Sleep Podcast: Recent Episodes
Project Sleep
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 work together toward making sleep cool! https://project-sleep.com/podcast/
Kim Leatherman works with preschoolers with autism and is a health and wellness coach. She was diagnosed with type 2 narcolepsy without cataplexy in her early 40s, but has been experiencing symptoms since her late teens. In sharing her story as a Rising Voices speaker, she hopes to shed light on this invisible sleep disorder and the impacts of living with it.
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
Kristyn Beecher is a storyteller and news producer from Houston, Texas. She was diagnosed with type 2 narcolepsy without cataplexy at age 24, but had lived with symptoms for many years before that. As a speaker with Project Sleep’s Rising Voices program, she tells her own story and hopes to let others living with narcolepsy know they aren’t alone.
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
Katie Williamsen is an entrepreneur and web designer. She has lived with type 1 narcolepsy with cataplexy for over six years and, by sharing her story, aims to raise awareness of this life-changing condition.
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
Victoria is a homeschooling mother of two, educational diagnostician, and major horse enthusiast. She was diagnosed with type 1 narcolepsy with cataplexy at 26 years old and now hopes to raise awareness of this condition. As a speaker with Project Sleep’s Rising Voices program, Victoria shares her experiences finding her diagnosis and living with narcolepsy. Through her story, she hopes to emphasize that feeling understood and accepted is important, even when you don’t understand and accept yourself.
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
This episode is spoken in Spanish. Grisel Pantoja fue diagnosticada con narcolepsia tipo 1 con cataplejía en 2016 pero esto no le impidió cumplir sus sueños. Grisel recibió su Licenciatura en psicología en FIU (Universidad Internacional de la Florida) con una especialización en educación en el 2017. Actualmente está cursando su maestría de psicología en consejería con especialización en salud mental.
Grisel quiere crear conciencia de lo que es la narcolepsia compartiendo su experiencia como oradora en el programa Rising Voices de Project Sleep. Grisel también disfruta en su tiempo libre de tocar el violín, escribir, le gusta la fotografía y pasar tiempo con su familia.
Rising Voices es el programa de capacitación de liderazgo de Project Sleep para crear conciencia sobre la narcolepsia y al mismo tiempo ayudar a nuevas generaciones de pacientes que compartan su historia a través de escribirlas y comunicarlas a otros. Aprende más: https://project-sleep.com/rising-voices/
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
This episode is spoken in French. Anne-Claude Foucault est associée aux opérations et à la mobilité des talents pour une agence de publicité pancanadienne. Elle est mère à temps plein et adore l'activité physique, en particulier le jogging et l'escalade. Elle a vécu sans le savoir avec une narcolepsie de type 1 avec cataplexie pendant 25 ans avant de recevoir son diagnostic en 2018. Aujourd'hui, en tant que conférencière pour Rising Voices of Narcolepsy, elle espère faire prendre conscience du vrai visage de ce trouble neurologique souvent mal compris. et entouré de clichés.
Rising Voices℠ est un programme de formation au leadership de Project Sleep
qui vise à sensibiliser aux troubles du sommeil tout en permettant à une nouvelle génération de défenseurs des patients de partager leurs histoires par l'écriture et la parole. Apprendre encore plus: https://project-sleep.com/rising-voices/
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
Anne-Claude Foucault is a Traffic Manager & Operation Partner in a Montreal-based marketing agency, a full-time mother, and a woman who loves physical activity, especially jogging and climbing. She lived with symptoms for 25 years before receiving her diagnosis of type 1 narcolepsy with cataplexy in 2018. Now, as a Rising Voices speaker, she hopes to deconstruct the preconceptions and clichés that surround this neurological disorder.
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Stephanie Manuli is an undergraduate student at North Carolina State University, where she is studying Biochemistry. Stephanie was diagnosed with type 2 narcolepsy without cataplexy in 2014 and is now a trained speaker with Project Sleep’s Rising Voices leadership program. Stephanie shares her story with the goal to raise awareness of this misunderstood condition.
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
Rachel Nesmith is a wife, mother, and speaker. She was diagnosed with type 1 narcolepsy with cataplexy in February 2002 and considers herself a real Superhero. As a Rising Voices trained speaker, she shares her story to raise awareness and reduce the stigma of this misunderstood neurological condition.
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
Jordan Taylor is a graduate of the University of Alabama where she had a prominent role on the university’s speech and debate and slam poetry teams. Diagnosed with narcolepsy type 1 at the age of 14, Jordan joined Project Sleep’s Rising Voices to share her story and raise awareness about the often misunderstood condition.
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
Kêta is a professional songwriter for SonyATV, traveling between LA and Atlanta for her work. She was diagnosed with narcolepsy with cataplexy at age 17 and now, as a Rising Voices trained speaker, she is educating audiences about what it is actually like to have narcolepsy while encouraging them to dream big and live full lives. You can learn more by finding her on Twitter or Instagram at @ThisIsKeta.
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
Ming Lai lives in Nevada and is a Registered Nurse, permaculturist, and Council Member and co-Office Manager for an antinuclear weapons interfaith peace nonprofit. He has lived with narcolepsy for over 30 years and now, as a Rising Voices writer, hopes to spread awareness and share his story.
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
Amy Desmarais is an SEO Analyst living in the Boston, MA area. She was a member of the Board of Directors for the Hypersomnia Foundation from 2017 – 2020, which she became involved with after being diagnosed with idiopathic hypersomnia in 2015. As a Rising Voices trained speaker, Amy hopes to spread awareness of hypersomnia by sharing her story.
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
Eilís Finnegan completed her Bachelor of Architecture, Bachelor of Interior Architecture Degrees from Auburn University. Eilís was diagnosed with type 1 narcolepsy with cataplexy in 2017 as a college sophomore and is now a trained speaker with Project Sleep’s Rising Voices program. In her presentation, Eilís educates on the basic facts of narcolepsy while also taking you on a journey through her “dreamscape”— her road to diagnosis, how she creatively manages symptoms today, and how she uses her career in Architecture to advocate for research into sleep conditions.
Check out Eilís' DREAM*S artwork on Instagram: @eilis_arch
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
Rachel Miyazaki is a production coordinator and houseplant enthusiast originally from Hawai’i, now living in Seattle. She struggled with sleep disorders since childhood and is living with type 1 narcolepsy with cataplexy. Now, as a Rising Voices writer, she wants to advocate for fellow people with narcolepsy, especially students and employees. In this episode, Rachel reads her thoughtful and witty essay, “The Awakening,” followed by a Q&A. Read her essay here: http://www.bmpvoices.com/the-awakening
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
Elizabeth Terry is a lifelong “Hoosier,” Indiana University graduate, and recreational therapist. Diagnosed with type 1 narcolepsy with cataplexy while in college in 2015, she became a trained speaker through Project Sleep’s Rising Voices program in 2018. By sharing her story, Elizabeth continues to build awareness for this misunderstood neurological condition and encourages others to do the same.
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
Ebony is a telecommunications engineer and identical twin from Leawood, KS, living with type 1 narcolepsy with cataplexy. As a trained speaker of Project Sleep’s Rising Voices program, Ebony shares her story to help separate facts from myths and spread awareness about this often misunderstood neurological condition.
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
Matthew Horsnell is a father of three, amateur strength athlete, and science nerd who incorporates invertebrate fossils into rock sculptures. Matt calls Nashville, TN, home. He was diagnosed with type 1 narcolepsy with cataplexy in 2007 and now, as a trained speaker with Project Sleep’s Rising Voices leadership program, aims to raise awareness about narcolepsy and sleep.
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
Brittany Matthews is a Texas girl living in a Chicago world. She earned a Bachelor of Science degree in Communication Disorders from the University of Houston. At the age of 19 after more than 12 years of struggling with mysterious symptoms, she learned she had type 1 narcolepsy with cataplexy. As a trained speaker with Project Sleep’s Rising Voices program, Brittany shares her story to health care professionals and the general public to shed light on the reality of living with this challenging and misunderstood condition.
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
Anna Marr is an LA-based actor, writer, and voiceover artist living with type 1 narcolepsy. When not performing or writing comedy, she enjoys consuming odd ice cream flavors, female-driven TV shows, and theme parks. She is a co-founder of Bluelaces Theatre Co., a non-profit that creates interactive, multi-sensory theatre for individuals with developmental differences. Anna was diagnosed with narcolepsy as a senior at Northwestern University. As a Rising Voices writer, she aims to change how the media represents this chronic neurological condition. She developed an award-winning short film about narcolepsy, Walking through Peanut Butter, based on her experiences navigating New York’s comedy scene with narcolepsy. You can learn more at https://project-sleep.com/walking-through-peanut-butter/
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
Dr. Mindi McKenna is a retired grandmother of five, with a third-degree Black Belt in Tae Kwon Do, living in Kansas City. She has been living with narcolepsy type 2 for over 25 years and is sharing her story because she hopes to help accelerate diagnosis and improve treatment for this often misunderstood condition. As a speaker with Project Sleep’s Rising Voices program, she will help us all understand what it can be like to be diagnosed with and live with this serious sleep disorder.
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
Katie Mehin is the Director of Career Services for a public school district in Arizona specializing in Career and Technical Education. Outside of work she enjoys spending time with my husband and two boys, ages 6 and 2. Entering her sophomore year of college she was diagnosed with narcolepsy and cataplexy, almost 5 years after the initial onset of her symptoms. Katie hopes to spread awareness of this neurological sleep disorder in an effort to help others in obtaining more timely diagnosis.
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Bob Cloud is a retired lawyer now living in Northern Vermont. He grew up in Ohio and married an Indiana girl 48 years ago, with whom he has two children. Bob practiced family, criminal, and general law for 30 years, during which time he learned to live with narcolepsy. His excessive sleepiness, catalepsy, and related symptoms appeared at age 33, during Bob’s first year of night law school. Now, 42 years later, and as a Rising Voices of Narcolepsy speaker, Bob is happy to share his journey in which supportive family, creative doctors and pharmaceutical providers, and understanding friends stood by him as a husband, father, lawyer, patient, and occasional fisherman with narcolepsy.
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
The Rising Voices Series features a variety of first-hand stories from people living with sleep disorders around the world. At Project Sleep, we believe in the power of storytelling to raise awareness and break down stigma. This is why we train people with sleep disorders on how to share their stories through the Rising Voices training program. To request a Rising Voices speaker for your conference or apply for an upcoming training program, visit: https://project-sleep.com/rising-voices/
Sheila Coutts is a retired pediatric nurse with an interest in health education and wildlife rehabilitation living in Nova Scotia, Canada. She was diagnosed with narcolepsy after 25 years of symptoms. As a trained Rising Voices of Narcolepsy speaker, she is sharing her story to educate others and help bring sleep disorders to the mainstream of society and medicine.
Please note: this audio was originally recorded in 2020. For up-to-date facts about narcolepsy treatment options: https://project-sleep.com/facts-about-narcolepsy/
Emmy Award-winning news anchor and correspondent Diane Macedo struggled with insomnia for years. She decided to attack the problem as a journalist, poring through research and interviewing sleep experts from all over the world to get to the bottom of what really keeps us from sleeping—and the various ways to fix it. Now recovered from insomnia, Macedo shares what she learned in her bestselling book, “The Sleep Fix,” offering readers expert wisdom, cutting edge research, and practical ways to incorporate evidence-based sleep solutions into our busy, everyday lives. This broadcast was originally recorded in March 2023, during the annual Sleep In event. Learn more about the Sleep In here: project-sleep.com/sleepin/
What are the connections between upper airway infections like the flu, our immune systems, and our brains? In today’s podcast, we're honored to speak with the 2023 Breakthrough Prize winner, Dr. Emmanuel Mignot, Director of the Stanford Center for Sleep Sciences and Medicine. Together, we discuss new advancements in our understanding of narcolepsy type 1 as a likely autoimmune disorder brought on by genetic and environmental factors like certain flu strains. This episode was recorded in April 2020 when the COVID-19 pandemic was still very new, yet this discussion remains timely and important as we continue to learn so much from the fascinating frontiers of immunology and neuroscience.
Sleep is often seen as this boring thing that doesn’t get us anywhere. In this podcast, we speak with sleep expert, Dr. Michael Grandner about re-shaping cultural perceptions of sleep, seeing sleep as an investment in our future. We also discuss the importance of winding down at night and cognitive behavioral therapy for insomnia.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. Find Dr. Grander at his website: http://www.michaelgrandner.com/ and on Instagram: https://www.instagram.com/michaelgrandner/This conversation was originally recorded in March 2020, during Project Sleep’s annual Sleep In to help society make peace with sleep. Learn more: https://project-sleep.com/sleepin/
How do you know if you have an occasional bad night's sleep or an actual sleep disorder? How do you untangle anxiety, depression, and insomnia? In this episode, we speak with Dr. Shelby Harris, a clinical psychologist, behavioral sleep medicine specialist, and the author of The Women's Guide to Overcoming Insomnia. Dr. Harris's Instagram: https://www.instagram.com/sleepdocshelby/Dr. Harris's website: https://www.drshelbyharris.com/ This conversation was originally recorded in March 2021, during Project Sleep’s annual Sleep In to help society make peace with sleep. Learn more: https://project-sleep.com/sleepin/
Why aren’t primary care doctors asking about sleep? This podcast covers an important but underrated discussion about what work is actually being done to develop better sleep disorder assessments and screening tools so that primary care doctors are better equipped to discuss sleep and more people reach an accurate diagnosis and treatment sooner.Guests include:Dr. Dennis Hwang - Pulmonologist, Primary Investigator for Sleep Vital Sign Study, Kaiser Permanente Sleep Medicine and Department of Research and Evaluation.Dr. Michael Perlis - Associate Professor of Psychiatry; Associate Professor of Nursing; Director of Behavioral Sleep Medicine Program at the University of Pennsylvania.Dr. Andrew Philip - clinical health psychologist and a leader working on healthcare transformation initiatives. He's passionate about integrating care to better address patient and provider needs, and enhancing care for underserved and often undervalued populations.This discussion was originally recorded during Project Sleep’s Sleep Advocacy Forum in October 2021. Learn more: https://project-sleep.com/2021-sleep-advocacy-forum/
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.
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/
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/
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/
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/
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/
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/
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/
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/
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/
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/
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/
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/
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/
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/
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/
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/
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/
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/
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/
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/