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.
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.
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 a doctor’s insight about her sleepiness. It was then she was diagnosed with Type 1 Narcolepsy.
Desiree Gorbea-Finalet is a person with Type 1 Narcolepsy and a student of Peace and Conflict Studies.
In this episode, Claire and Desiree 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.
Director of the Sleep and Health Research Program at the University of Arizona, Dr. Gardner discusses how although he is a clinical psychologist, his focus is on sleep behavior. He is interested in understanding collectively our relationship with sleep and what causes disruptions in our sleep and therefore affects our day-to-day functions.
Nicole Kenyon has 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 childhood, but because she was very athletic it was often glossed over.
Matthew Horsnell has Type 1 Narcolepsy and 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 discuss 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.
Grace McGinnis is a college student studying Pre Med, a Division 1 college athlete and was diagnosed with Type 1 Narcolepsy. In this episode, Grace and Claire discuss how she 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.
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 also has Type 1 Narcolepsy. In this episode, Dr. Church shares his diagnosis story which occurred alongside his daughter’s diagnosis of narcolepsy. He offers insight on how he navigated his symptoms prior to diagnosis. He also shares how he currently manages his symptoms to live optimally at home and in his thriving lab.
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 with disclosing her diagnosis with work, navigating friendship, and her passion for sleep education.
Dr. Jennifer Gudeman is 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. Gudeman and her team are focused on publications of primary and secondary data from the phase 3 REST-ON trial of investigational once-nightly FT218 and building out the medical affairs programs. They are also leading an ongoing open-label extension clinical study, called Restore, to evaluate the long-term safety and tolerability of investigational once-nightly FT218.
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 in Rochester, MN and got a consultation from Dr. Kotagal.
Travis also shares how the diagnosis of narcolepsy type 1 affected the entire family. Claire and Travis reflect on the co-morbid and behavior issues that arise for children with narcolepsy. Also how while establishing accommodations for CWN there is a lot of education involved to help administration and teachers understand narcolepsy.
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 her symptoms seriously. They chose to test her for other issues. What Shamarla experienced was medical racism and part of her narcolepsy advocacy is to help raise awareness and educate doctors so that other Black Americans and people of color will be listened to when they communicate their symptoms.
Dr. John Peever is a professor of Cell and Systems Biology at the University of Toronto. In this episode, Dr. Peever shares his passion for 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 Canadian Sleep Society, he highlights how essential sleep is part of daily lives and our overall health. Learn more about Dr. Peever’s research.
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 how her mental health was affected by her drug prescriptions to her narcolepsy symptoms. Claire and Ginger discuss how she handles her narcolepsy while always having to be prepared to travel for work as a chief meteorologist for ABC News when a major weather event takes place.
Belle Hutt is a fitness instructor, influencer, author, advocate and a diagnosed with narcolepsy type 1. In this podcast, shares how she navigated her education while having narcolepsy and not feeling comfortable to disclose it to her professors. Ultimately, she decided to get personal trainer certification.
Gradually Belle felt more confident sharing her reality of life with narcolepsy. She began a blog and talked about it along with fitness on her Instagram. She found that exercise GAVE her energy. Belle was featured in a BBC documentary about her narcolepsy and her online community blossomed. This year Belle published Energetic Narcoleptic, a book that shares her story, simple workout routines, easy nutritional meals and more all designed to help promote energy for people with narcolepsy and those without. On top of all of that, Belle continues to be a fitness instructor at a gym in Amsterdam and online with her Belle Hutt Live Community.
Dr. Indra Narang is the Director of Sleep Medicine at the Hospital for Sick Children, in Toronto, Canada. She is also an Associate Professor at the University of Toronto. Dr. Narang specializes in many sleep disorders including pediatric obstructive sleep apnea and narcolepsy. She established the first pediatric narcolepsy clinic in Toronto which is now a large multi-disciplinary team effort. In this episode, Dr. Narang talks about her journey into pediatric sleep medicine. She shares what new medicines she is interested in and how it will affect children with narcolepsy’s symptom management. She also shares her current research focuses on the impact of narcolepsy on mental health in children and their families.
Emily Kreuziger is a mom, a professional snowmobiler and a person with narcolepsy. In this episode, Emily shares her long diagnosis process. After being diagnosed and learning more about narcolepsy, she realized her first symptoms started 10 years prior to her actual diagnosis. She also shares how she went from originally being diagnosed with IH, then narcolepsy type 1 to now her proper diagnosis of narcolepsy type 2. As a new mom, Emily generously shares her experience of becoming pregnant, her decision to go off meds, the delivery and now, what it’s like to be back on medication with a baby.
Emily also is a professional snowmobiler. It’s a family affair, which is awesome, but Emily goes into detail on how she manages her narcolepsy symptoms and energy as she trains and races on a snowmobile.
Gary Rutter is a sheep shearer, dad and individual with narcolepsy. You read it right, a sheep shearer, a job so physical that you burn the same amount of calories as if you just ran a marathon. In this episode, Gary shares how he came about doing his unique occupation. He also shares that he was diagnosed with Type 1 Narcolepsy just a few years ago despite experiencing symptoms since he was in middle school. Since his proper diagnosis, Gary has been navigating narcolepsy treatment, his occupation, and most recently becoming a dad. He shares how he has been working to have his sleep schedule in line with his sons. Gary is very in tune with his body and has been experimenting and learning ways to be efficient with his energy use.
Dr. 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.
TW: This episode discusses sexual assault and rape, which may be triggering for some individuals.
Lauren Thomas is a person with narcolepsy, a narcolepsy advocate and works in the champagne business. In this vulnerable and candid episode, Lauren shares how she was diagnosed with narcolepsy just a little over a year and a half ago but recounts how narcolepsy symptoms were part of her childhood. Lauren also shares her journey with mental health issues, which she now considers were linked to narcolepsy and directly contributed to her delayed diagnosis. After college, she finally saw an endocrinologist, who was helping her with weight loss and recommended a sleep study. This was a pivotal experience that led to a diagnosis of Type 1 Narcolepsy at the age of 28.
Despite Lauren’s long journey to diagnosis, she’s taken time to fine-tune her medication and adapt her life to support her symptom management, and during this period began to work for her family’s company, Cheurlin Champagne, the 1st African American-owned Champagne Company.
Dr. David Ingram is a pediatric sleep physician at Children’s Mercy Hospital. In addition to caring for children with sleep problems in clinic, he is the founding editor of the ATS Pediatric Sleep Case Series and is adjunct faculty in the department of psychology where he teaches a college Sleep & Dreams course. In this episode, Dr. David Ingram shares when he first learned about sleep medicine and why he chose to become a sleep medicine clinician. Dr. Ingram also shares how he approaches his pediatric treatment of children with narcolepsy. Claire and Dr. Ingram discuss transitional care for CWNs, assessing driving readiness in adolescents with narcolepsy and current research he is conducting in collaboration with Wake Up Narcolepsy. Dr. Ingram shares what surprised him about his findings in the recent research study. Its purpose is to better define the delivery of comprehensive care for children with narcolepsy, with a multidisciplinary approach to treatment.
Shannon Burkoth is a person with narcolepsy, mother, and narcolepsy advocate in the rare disease space. In this episode, Shannon shares how she was diagnosed with narcolepsy when she turned 30, but since then has realized she experienced narcolepsy symptoms since she was a child. Shannon also offers her journey to finding the right doctor and medication. She highlights how people with narcolepsy often deal with multiple comorbid issues which can be exacerbated with the wrong medication.
Shannon also shares her journey to becoming a narcolepsy and rare disease advocate. She highlights the grief experience after being diagnosed and no longer able to do the activities she once enjoyed. Through conferences, meeting other advocates, and participating in the Rising Voices of Narcolepsy program, Shannon is empowered to share her story to educate and create awareness.
Kelly Main is a person with narcolepsy, studying law, and expert sailor living in New Zealand.
In this episode, Kelly shares that she struggled with narcolepsy symptoms since her childhood, but because she was so active in sports her diagnosis was delayed. Doctors believed she was tired from growing and her very physical activity. Kelly has had a passion for sports and found herself excelling once she discovered sailing. She was on a competitive school sailing team, they ended competing in New Zealand & Australia Secondary School Championships. Her team won ALL the races that day.
Kelly also shares her experience navigating friendships and social life while undiagnosed and how she struggled with people not understanding her sleepiness. In university, Kelly began researching her symptoms and found information on narcolepsy. She took the evidence to a doctor, conducted a sleep test and was diagnosed.
Thaddeus Bath is a person with narcolepsy and is part of Wake Up Narcolepsy’s 2020 #TeamWUN for the Boston Marathon.
In this episode, Thaddeus shares how he was diagnosed with narcolepsy Type 2 in 2016. He discusses how sobriety helped realize that there was something bigger happening with his sleep issues. He also shares how fitness is an active passion of his. He is training for his black belt in Taekwondo, regularly goes to the gym to lift AND He runs…not just 5ks but half marathons, marathons and ULTRA marathons (100 miles long).
Thaddeus is currently part of the 2020 #TeamWUN for the Boston Marathon. Together they are training and working to raise $50,000 for narcolepsy research. Although a marathon is hardly a big feat for him anymore, it is an honor for him to participate in the Boston Marathon through spreading narcolepsy awareness and raising funds for narcolepsy research.