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Narcolepsy 360

Wake Up Narcolepsy

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Every person diagnosed with narcolepsy embarks on a unique journey. There is no standard path, and for many, this proves to be among the most challenging aspects of the disorder. The Narcolepsy 360 podcast is a series of interviews that take a panoramic view of narcolepsy from the patient, caregiver, research and clinical perspective. Each conversation draws on experiences, best practices and expert advice from patients, parents and doctors. From the latest research to lifestyle tips, our po ...
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Have you ever heard of narcolepsy? Did you know that September 22, 2022 is World Narcolepsy Day? Find out more about how Wake Up Narcolepy (WUN) is raising awareness of this sleep disorder and making a difference in the lives of many. Monica Gow, WUN Co-Founder and Executive Director, joins My Sleep Journey. Want to fundraise for WUN, send an email…
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Hi, Everyone! This is just a quick intro (teaser) into the world of mattresses! I'll be posting a longer video that will give you great mattress buying info soon! Check out more information on sleep and mattresses on our YouTube channel and consider joining our Patreon! YouTube: https://youtu.be/aJbsbuKzqgA Patreon: https://www.patreon.com/somnolen…
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In this episode, I speak with narcolepsy advocate, Thomas Gow, about Wake Up Narcolepsy; what it was like to have grown up with narcolepsy; and the importance of sleep. To support Julie Meltzer's Boston Marathon run to raise funds for narcolepsy research, donate here: https://www.givengain.com/ap/julie-meltzer-raising-funds-for-wake-up-narcolepsy-i…
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Tatiana Maria Corbitt is a writer, artist and advocate. Tatiana is also a person with Type 1 Narcolepsy. In this episode, Tatiana and Claire discuss how the onset of her symptoms occurred after having the flu, while in the first year of college. She was diagnosed in 2017 while studying Applied Biological Studies. Since she experienced such a drasti…
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Thomas Gow is a Client Experience Analyst at TruDataRx. Thomas is also a person with Type 1 Narcolepsy and one of the inspirations to the creation of Wake Up Narcolepsy. In this episode, Thomas shares his experience of diagnosis at the age of 10 and how it wasn’t until he began to experience cataplexy that something bigger was going on beyond just …
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Tove Maren Stakkestad is a Danish American Writer and Blogger. She is currently sharing her experience of being a mom of 4 boys on her blog Mama In The Now. Tove is also a person with Type 1 Narcolepsy. In this episode, Tove reflects that she believes both her father and grandfather had narcolepsy and she had a sleepy childhood. When her mother too…
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Desireé Gorbea-Finalet is a person with Type 1 Narcolepsy and a student of Peace and Conflict Studies. In this episode, Claire and Desireé discuss how because she was labeled as a “good sleeper” as a young child that it may have contributed to a delayed diagnosis. Growing up in Puerto Rico, her family had a history of migraines so when she sought o…
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Dr. Grandner is the Director of the Sleep and Health Research Program at the University of Arizona, Director of the Behavioral Sleep Medicine Clinic at the Banner-University Medical Center, and an Associate Professor in the Department of Psychiatry at the UA College of Medicine, with joint appointments in the Departments of Medicine, Psychology (UA…
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Nicole Kenyon is a person with Type 1 Narcolepsy. She is also a multi-faceted narcolepsy advocate. She is an author of a memoir, a blogger, legislative advocate, personal trainer and the face of @fitniknarcoleptic Instagram where she shares workout routines. In this episode, Nicole shares how she struggled with excessive sleepiness most of her chil…
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Matthew Horsnell is a person with Type 1 Narcolepsy. He also is a multi-faceted narcolepsy advocate. He’s a speaker, a blogger, legislative advocate and narcolepsy support group leader. In this episode, Matthew and Claire discussed how becoming a dad pushed him to figure out his extreme daytime sleepiness that he dealt with throughout his childhood…
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Grace McGinnis is a college student studying Pre Med, a Division 1 college athlete and also a person with Type 1 Narcolepsy. In this episode, Grace and Claire discuss how Grace functioned as a “sleepy child” and how she was aware at a young age that her experience of sleepiness wasn’t normal. In her sophomore year of high school, her health and per…
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Dr. George Church is a Professor at Harvard & MIT, co-author of 580 papers, 143 patent publications & the book "Regenesis"; developed methods used for the first genome sequence (1994) & million-fold cost reductions since (via fluor-NGS & nanopores), plus barcoding, DNA assembly from chips, genome editing, writing & recoding; co-initiated BRAIN Init…
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Ginna Freehling is a neuroscience graduate and works in cancer clinical research at a biotech company. She is also a PWN. In this episode, Ginna shares how at the age of twenty she started experiencing symptoms of narcolepsy. In the process of trying to figure out what was going on, she was discouraged by her sleep specialist to not seek a formal d…
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Spring forward has come and gone, but its effects are still being felt (especially among night owls)... In fact, some people never quite get over it. So, what can you do to help yourself through it? I'll share about that with you. I also update you on what I've been doing and give you insights on morning routines and night owls. Have a listen! Clic…
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Dr. Jennifer Gudeman is the Vice President, Medical and Clinical Affairs at Avadel Pharmaceuticals. In this episode, Dr. Gudeman and Claire discuss how Avadel Pharmaceuticals is seeking FDA approval for a once-nightly form of sodium oxybate (FT218) for the treatment of EDS and cataplexy in people with narcolepsy. Dr. Jennifer Gudeman was appointed …
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Travis Pavlicek is a husband, father of three and his son Cruz is a child with narcolepsy. In this episode, Travis shares how the onset of Cruz’s narcolepsy symptoms escalated within a span of 3 weeks. He details how his family struggled to find a doctor who knew what was going on with Cruz until finally they drove through the night to Mayo Clinic …
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Shamarla Morgan is a PWN and a narcolepsy advocate. In this episode, Shamarla shares how despite a self-diagnosis of narcolepsy type 1 within the first year of her symptoms, it took four years for her to receive a proper diagnosis. She experienced many frustrating interactions with doctors who didn’t take her communication about the disorder and he…
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Dr. John Peever is a professor of Cell and Systems Biology at the University of Toronto. In this episode, Dr. Peever shares why he got into narcolepsy and other sleep disorders research. He shares what his latest research is focusing on and how sleep research may influence future narcolepsy treatments. In his efforts through research and the Canadi…
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Ginger Zee is the chief meteorologist for ABC News, author, advocate and a person with narcolepsy. In this episode, Ginger shares her journey to being diagnosed with narcolepsy type 2. She also shares about how her mental health was affected by her drug prescriptions to her narcolepsy symptoms. Claire and Ginger discuss how she handles her narcolep…
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It's a new year... and January is often a time when many of us think about eating well and working out! During this episode, I speak with Laura Brigance about how health journey into healthy eating.... and how that led her to sleep health and wellness! What would you like to learn about food and sleep? http://tinyurl.com/yt4s5xh7 Send us a message …
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Do you ever get tired of hearing one-size-fits-all answers about solutions to sleep problems? Do you feel that the experts never take into account crisis situations or chronic, long-term issues that can't be resolved easily? What do you do if your lifestyle, particularly your work, is at odds with your being a night owl, for instance. Will you ever…
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