Narcolepsy 360: Tatiana Maria Corbitt
Narcolepsy 360
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 drastic shift while in the midst of her college career, Tatiana had challenges navigating her studies, managing her symptoms, receiving appropriate accommodations and maintaining her mental health. Initially, Tatiana’s family was supportive throughout...
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Narcolepsy 360: Thomas Gow
Narcolepsy 360
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 being sleepy. He shares how he navigated his educational journey from middle school to grad school, playing sports and now working a full-time job. In his acceptance of narcolepsy, he took logical risks to see how his body could handle different...
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Narcolepsy 360: Tove Maren Stakkestad
Narcolepsy 360
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 took her to the doctors they thought it was childhood epilepsy and didn’t require further treatment. When she started falling asleep during client meetings, she sought out doctor’s insight about her sleepiness. It was then she was diagnosed...
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Narcolepsy 360: Desireé Gorbea-Finalet
Narcolepsy 360
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 out help her doctors and neurologists focused on the migraines rather than her excessive daytime sleepiness. Despite struggling with excessive daytime sleepiness, Desireé was always super productive during her wakefulness. She...
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Narcolepsy 360: Dr. Michael Grandner
Narcolepsy 360
Dr. Grandner is the Director of the at the , Director of the Behavioral Sleep Medicine Clinic at the , and an Associate Professor in the Department of at the , with joint appointments in the Departments of (), (), and . His research focuses on how sleep and sleep-related behaviors are related to cardiovascular disease, diabetes, obesity, neurocognitive functioning, mental health, and longevity. In this episode, Claire and Dr. Grandner discuss how although he is a clinical psychologist, his focus is on sleep behavior. He is interested in understanding collectively our relationship with...
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Narcolepsy 360: Nicole Kenyon
Narcolepsy 360
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 Instagram where she shares workout routines. In this episode, Nicole shares how she struggled with excessive sleepiness most of her childhood, but because she was very athletic it was often glossed over. Multiple times she went to doctors seeking help but whether it was her weight or her active lifestyle, they didn’t listen and her diagnosis was delayed. It wasn’t until college while talking to a...
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Narcolepsy 360: Matthew Horsnell
Narcolepsy 360
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. He, in his words, “passed the test with flying colors,” and was diagnosed with Type 1 Narcolepsy. After navigating living with narcolepsy, being a parent and generally being an adult for a few years, Matthew realized he wanted to...
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Narcolepsy 360: Grace McGinnis
Narcolepsy 360
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 performance as a swimmer were deteriorating. She sought insight from doctors. Around the 5th doctor, they suggested she get a sleep test. She was diagnosed with Type 1 Narcolepsy. Now, Grace is in college and is also a competitive...
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Narcolepsy 360: Dr. George Church
Narcolepsy 360
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 Initiative (2011) & Genome Projects, machine learning for protein engineering, tissue reprogramming, organoids, xeno-transplantation, in situ 3D DNA, RNA and protein imaging. He is also a person with Type 1...
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Narcolepsy 360: Ginna Freehling
Narcolepsy 360
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 diagnosis. For the next few years, she managed her symptoms on her own. Finally, as symptoms worsen she was able to get a sleep test at Stanford and was diagnosed with Type 1 narcolepsy. Ginna offers insight on medication titration, her experience...
info_outlineDr. Deborah Hartman leads the global research program for narcolepsy and other sleep-wake disorders at Takeda, a biopharmaceutical company.
In this episode, Dr. Hartman talks about Takeda’s approach to studying sleep-wake disorders and the importance of working together with people with narcolepsy to better understand what is needed, and with the scientific and medical community to develop potential new therapies. Dr. Hartman and Claire discuss the lack of understanding around narcolepsy, including the difference between narcolepsy type 1 and type 2. Importantly, Dr. Hartman digs into the science behind sleep-wake disorders, including the cause of narcolepsy type 1 and how researchers have identified the neuropeptide, orexin as the master regulator of sleep and wakefulness.
Additionally, Dr. Hartman walks through the process of discovering a new drug and conducting clinical trials, as well as how the ongoing COVID-19 pandemic has impacted research worldwide. You can learn more about ongoing clinical trials in narcolepsy here: https://www.wakeupnarcolepsy.org/research/clinical-trials/.
Thank you to Dr. Hartman for joining us and to Takeda for their partnership and ongoing research into sleep-wake disorders like narcolepsy. You can follow Takeda at @TakedaPharma on Twitter.
You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.