Narcolepsy 360
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 podcasts shed light on the less discussed issues around narcolepsy. Join Claire Crisp, our Executive Director, as she chats every week with people within our community.
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Narcolepsy 360: Tatiana Maria Corbitt
08/12/2021
Narcolepsy 360: Tatiana Maria Corbitt
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 her diagnosis process, but coming to terms that there wasn’t a cure for narcolepsy has caused a strain within the familial relationships. Their hope for her to become a doctor was thwarted when Tatiana couldn’t find a university with the appropriate disability resource office available that would advocate for her in her studies. Tatiana currently writes for Health Union about living with narcolepsy. Tatiana shares with Claire her current medication and the value of having a service dog. Her service dog, Kida, assists her in so many different facets which helps Tatiana feel safe while managing symptoms. Because Tatiana’s narcolepsy caused such a drastic change in her quality of life, she has had to navigate changes in friendship and familial relationships. Thankfully, she has found community in the Wake Up Narcolepsy Online Support Groups. She recently became a facilitator for a WUN Support Group - LGBTQIA Support Group. You can follow Tatiana on on Instagram. Her art Instagram is . You can check out her writings about living with narcolepsy . Tatiana says, “I recommend the Wake Up Narcolepsy Narcolepsy LGBTQIA+ Support Group that I lead on Fridays. They also have other support groups for people with Narcolepsy that I’ve participated in and highly recommend, especially for people that are newly diagnosed or who don’t have support systems at home.” You can follow Wake Up Narcolepsy at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcolepsy 360: Thomas Gow
07/29/2021
Narcolepsy 360: Thomas Gow
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 life experiences. Routines, goals, support systems and logical risks have all played a part in helping him embrace his narcolepsy. He believes narcolepsy has allowed him to grow in a way that gives him a completely different perspective on the world. He says, “[Narcolepsy] is along the ride to where you want to go in life.” It isn’t driving you. You can follow Thomas on Instagram and on You can follow Wake Up Narcolepsy at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcolepsy 360: Tove Maren Stakkestad
07/15/2021
Narcolepsy 360: Tove Maren Stakkestad
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 with Type 1 Narcolepsy. As her fourth child was on the way, Tove’s husband suggested that she start a blog as a means to creating an income and assist her in the ability to stay home and raise her kids. She writes about motherhood with honesty and humor. Tove is currently unmedicated and lives a lifestyle she calls unapologetic self-care. There is so much to learn through Tove’s blog but Claire asks specifically about a post where Tove describes how narcolepsy has made her a better parent. You can follow Tove on Instagram, Facebook, Twitter and Pinterest. You can also check out her blog Mama In the Now . Tove recommends joining The Facebook Group: - A fun group for mothers from all stages of motherhood. Also, - This is a cozy drama-free group of women who embrace the Danish lifestyle of “hygge” (mindfulness and coziness). We share book recommendations, arts and crafts - just all the things that make you feel warm and fuzzy inside. You can follow Wake Up Narcolepsy at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcolepsy 360: Desireé Gorbea-Finalet
07/01/2021
Narcolepsy 360: Desireé Gorbea-Finalet
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 participated in extracurricular activities and completed both high school and her undergrad within three years. In 2017, after the destructive effects of Hurricane Maria, Desireé came to the States. Since coming to the States she has been able to receive better narcolepsy care and get plugged into a local support group. Desireé encourages everyone to listen to their bodies and intuition and to not give up advocating for yourself until you find out what is “wrong” with your body. You can follow Desireé on Instagram. She recommends the following Facebook groups -- Foothills Narcolepsy Support Group (Specifically for individuals living in North-Western North Carolina and Southern Virginia), Narcolepsy Humor, and Narcolepsy Support Group. You can follow Wake Up Narcolepsy at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcolepsy 360: Dr. Michael Grandner
06/10/2021
Narcolepsy 360: Dr. Michael Grandner
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 sleep and what causes disruptions in our sleep and therefore affects our day-to-day functions. Dr. Grandner shares what his lab is currently studying, but also deep dives into how sleep greatly affects our mental health, mental wellness, memory and mental acuity. He shares his insight on how diet, nutrition and sleep all intricately interact. Dr. Grandner is constantly asking, “How do we improve people’s sleep?” We really appreciate learning about sleep and sleep health from a sleep behavioral approach, thank you Dr. Grandner for your time and sharing with our community. To learn more about Dr. Grandner's research and work you can check . You follow Dr. Grandner on Twitter and on Facebook. You can follow Wake Up Narcolepsy at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcolepsy 360: Nicole Kenyon
06/03/2021
Narcolepsy 360: Nicole Kenyon
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 fellow rugby teammate who recently was diagnosed with narcolepsy did she find the answer to her experience as well. Despite knowing she had narcolepsy it still took a while before getting diagnosed, and the doctor who initially oversaw her treatment didn’t provide effective care. Today, Nicole has a great sleep specialist. Because of her arduous experience, Nicole is passionate about advocating for CWN. Nicole in early 2020 was diagnosed with MS. This has brought about new questions on whether MS caused her narcolepsy. Nicole has invested in herself through fitness and a healthy lifestyle. She offers insight into the importance of working out for health reasons and learning to love yourself. You can follow Nicole at on Instagram. You can read her memoir here and . You can also read her blog . You can follow Wake Up Narcolepsy at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcolepsy 360: Matthew Horsnell
05/20/2021
Narcolepsy 360: Matthew Horsnell
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 be vocal about his narcolepsy and spread narcolepsy awareness. Matthew is a generous narcolepsy advocate. He first entered into advocacy through the . He participated in Project Sleep’s to help him confidently speak about living with narcolepsy. Today he advocates by speaking at events, webinars, and participating as a legislative advocate in DC. He writes blogs on Health Union about living with narcolepsy. He facilitates a weekly online support group through Wake Up Narcolepsy. He also is an active social media advocate posting and spreading awareness with the hashtag = . Matthew shares about how exercise, therapy, support groups, and connecting with the narcolepsy community have brought about a fuller life. We really appreciated Matthew’s honesty and empathy that he offers in sharing his experiences living with narcolepsy. You can follow Matthew at on Instagram and on Twitter. You can read his writings about narcolepsy for Health Union . You can watch his You can also watch his presentation, during Wake Up Narcolepsy REAL: Navigating Narcolepsy and Mental Health Education Day Webinar. You can follow Wake Up Narcolepsy at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcolepsy 360: Grace McGinnis
05/06/2021
Narcolepsy 360: Grace McGinnis
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 swimmer for the University of Miami! Grace candidly shares how she navigates her daily life of practice, school and friendship. She recommends structure, schedule and naps! She also offers insight into what it has been like to be so transparent about her narcolepsy. Grace’s honesty is so welcoming and it is no surprise as she has created a blog called , to share her experience with sleep health and narcolepsy. You can follow Grace at and on Instagram. She recommends joining narcolepsy groups on Facebook because as she says, “ It’s a great way to connect with people and learn more.” You can follow Wake Up Narcolepsy at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcolepsy 360: Dr. George Church
04/22/2021
Narcolepsy 360: Dr. George Church
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 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. Claire was fortunate enough to have Dr. Church explain what his lab focuses on and if he has any future plans to conduct narcolepsy research. You can follow Dr. George Church on Twitter and learn more about his research and work . You can follow Wake Up Narcolepsy at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcolepsy 360: Ginna Freehling
04/08/2021
Narcolepsy 360: Ginna Freehling
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. She says, “As a society, we don’t put enough emphasis on the value of sleep.” You can follow on Instagram . She says, “The XYREM/XYWAV Facebook group has been helpful to learn about others' experiences in switching to XYWAV from XYREM.” Ginna also offers, “In general I would say exercise and a diet low in simple carbohydrates can help with EDS. I follow a gluten-free diet due to a wheat allergy and IBS but have subsequently found that it helps my daytime wakefulness as well. Individuals with resources surrounding this include Belle Hutt on Instagram and Gina Dennis' page ” You can follow Wake Up Narcolepsy at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcolepsy 360: Dr. Jennifer Gudeman
03/25/2021
Narcolepsy 360: Dr. Jennifer Gudeman
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 Vice President, Medical and Clinical Affairs at Avadel in December 2020. Avadel is a global biopharmaceutical company committed to improving the standard of care for 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. Dr. Gudeman has published numerous peer-reviewed papers and provided domestic and international presentations on partnership with industry for drug development. In 2017, Dr. Gudeman received the Healthcare Businesswomen’s “Rising Star” award. During her career, she has led or contributed to six commercial product launches and three clinical development programs, as well as led interactions with medical societies and patient advocacy organizations to help ensure that commercial medications fulfill their clinically proven therapeutic benefits to patients and providers. Prior to joining Avadel, Dr. Gudeman was Vice President, Medical Affairs at AMAG Pharmaceuticals, overseeing a team of medical science liaisons and scientific communications. Dr. Gudeman graduated summa cum laude with a bachelor’s degree in pharmacy and magna cum laude with a doctorate in pharmacy from St. Louis College of Pharmacy in 1999 and 2000, respectively. To find out more information about Avadel’s Restore Study please go . You can follow Wake Up Narcolepsy at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcolepsy 360: Travis Pavlicek
03/11/2021
Narcolepsy 360: Travis Pavlicek
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. Travis really advocates for parents with CWN to connect with other parents on Facebook groups, to read about children and adult experiences, and be honest with your immediate community. Finally, Travis shares how WUN’s Narcolepsy Family Camp had a profound effect on Cruz. You can follow Travis on Instagram and on Facebook . Here are some Facebook groups that Travis recommends: Narcolepsy Support Group, Wake Up Narcolepsy, Parents of Children with Narcolepsy, XYREM/XYWAV Support Group, Project Sleep, Narcolepsy Network, More Than Tired and Know Narcolepsy. You can follow Wake Up Narcolepsy at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcolepsy 360: Shamarla Morgan
02/25/2021
Narcolepsy 360: Shamarla Morgan
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. Shamarla also shares her experience with not taking medication and the decision to take medication when she was in college. Shamarla is really in tune with her body and her biggest lifestyle recommendation is to take naps. Sleep is medicine! You can follow Shamarla on Instagram and on Facebook . You can follow Wake Up Narcolepsy at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcolepsy 360: Dr. John Peever
02/11/2021
Narcolepsy 360: Dr. John Peever
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 Canadian Sleep Society, he highlights how essential sleep is part of daily lives and our overall health. You can learn more about Dr. John Peever’s research . You can follow Wake Up Narcolepsy at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcolepsy 360: Ginger Zee
01/28/2021
Narcolepsy 360: Ginger Zee
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 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. Ginger details her pregnancy experiences and being a mother of two. On top of her work as a meteorologist, Ginger is also an author. Ginger has written a memoir, Natural Disaster--I cover them, I am one, and a YA fiction series called Chasing Helicity. Ginger is an advocate for both narcolepsy awareness and encouraging young people to go into STEM. You can follow Ginger at on Instagram, on Facebook, and on Twitter. You can check out her books on . You can follow Wake Up Narcolepsy at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcolepsy 360: Belle Hutt
10/01/2020
Narcolepsy 360: Belle Hutt
Belle Hutt is a fitness instructor, influencer, author, advocate and a pwn. In this episode, Belle shares her journey to being diagnosed with narcolepsy type 1. She also shares how she navigated her education while having narcolepsy and not feeling comfortable to disclose to her professors about it. 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. We are grateful for Belle’s advocacy and partnership, as she has participated in leading a session at our Narcolepsy Summer Camp and interview on fitness for Doing Life During COVID-19 mini-series. You can follow Belle at on Instagram. You can check out () and (). To join her Belle Hutt Live Community, you can learn more on Instagram.
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Narcolepsy 360: Dr. Indra Narang
09/17/2020
Narcolepsy 360: Dr. Indra Narang
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. Dr. Narang is qualitatively exploring the symptoms of narcolepsy on the quality of life and functioning in adolescents. You can follow Wake Up Narcolepsy at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcolepsy 360: Emily Kreuziger
09/03/2020
Narcolepsy 360: Emily Kreuziger
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. You can follow Emily at on Instagram, and on Facebook, and on YouTube. You can follow Wake Up Narcolepsy at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcolepsy 360: Gary Rutter
08/20/2020
Narcolepsy 360: Gary Rutter
Gary Rutter is a sheep shearer, a dad and a person 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 intune with his body and has been experimenting and learning ways to be efficient with his energy use. We must say it’s very interesting and inspiring. You can follow Gary at on Instagram, on Facebook and at on Twitter. You can follow Wake Up Narcolepsy at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcolepsy 360: Dr. Deborah Hartman
07/30/2020
Narcolepsy 360: Dr. Deborah Hartman
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. 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: . 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 on Twitter. You can follow Wake Up Narcolepsy at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcolepsy 360: Lauren Thomas
07/16/2020
Narcolepsy 360: Lauren Thomas
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. Lauren also tested positive for COVID-19 this past March. She shares her experience fighting the virus and how her symptoms weren’t necessarily the standard symptoms being communicated. You can follow Lauren at on Instagram and her family’s business, Cheurlin Champagne, on Instagram. If you are interested in finding out more information about Cheurlin Champagne go to . Lauren recommends Wide Awake and Dreaming by Julie Flygare. She is on the planning committee for World Narcolepsy Day with . She also recommends an alarm clock called MedCenter. She says, “ I am obsessed with my talking alarm clock. I can set up to 4 different alarms at a time and it literally says ‘the time is .... this your reminder to take your meds..’ relentlessly, it’s annoyingly efficient!” You can follow Wake Up Narcolepsy at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcolepsy 360: Dr. David Ingram
07/02/2020
Narcolepsy 360: Dr. David Ingram
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. Dr. Ingram will be presenting “Care for the Child with Narcolepsy: A Survey of Families and Providers” at our upcoming WUN Narcolepsy Webinar on July 18, 2020. This WUN Education Day is free and can be attended from the comfort of your home! We are grateful to Dr. Ingram’s dedication to pediatric sleep medicine and his work to help expand the field's understanding of effective treatment for CWNs and their families. You can follow us at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcolepsy 360: Shannon Burkoth
06/18/2020
Narcolepsy 360: Shannon Burkoth
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. Shannon thank you for your advocacy! You can follow Shannon at on Instagram and on Facebook. You can learn more about Shannon’s advocacy work at . Shannon says, “I want all people with narcolepsy to know they are not alone and there is an incredible community waiting to embrace them!” Shannon recommends Project Sleep’s , Wake Up Narcolepy’s , , Wake Up Narcolepy’s and Narcolepsy Network . You can follow us at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Narcoley 360: Kelly Main
06/04/2020
Narcoley 360: Kelly Main
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. This was less than a year ago. It was a pleasure to hear Kelly’s story. You can follow Kelly at on Instagram. You can follow us at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Doing Life During COVID-19: Homeschooling During a Pandemic with Lindsay Jesteadt
05/09/2020
Doing Life During COVID-19: Homeschooling During a Pandemic with Lindsay Jesteadt
Part of mission is to provide supportive resources for people with Narcolepsy and their families. During this time of massive daily life alterations, we want to continue to offer those resources. We are all going through a traumatic event together and as we are adapting to a new normal within our homes some may find it difficult to create structure. We created a miniseries called Doing Life During COVID-19 to address different aspects of daily life we may need extra support with during this time. Wake Up Narcolepsy's Executive Director, Claire Crisp talks with Lindsay Jesteadt, Director of Development at Wake Up Narcolepsy. Claire has experiencing homeschooling and Lindsay has a PhD in Educational Leadership with an emphasis on Special Education Policies and Procedures. She has held an assistant principal position and teaching graduate-level students online. Both Claire and Lindsay are parents to children with narcolepsy. In this discussion, Claire and Lindsay share their current experience homeschooling their kids while working a fulltime job while safer at home protocols are in place. They share insights about the main issues the educational system is facing during the mandated homeschooling. They discuss from their experience the potential positives and negatives for CWN being educated at home. They share resources that may be helpful for students and parents who are experiencing homeschooling during this time. You can follow us at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Doing Life During COVID-19: Trauma + Isolation with Dr. Cynthia Eriksson and Dr. Alison Wong
05/08/2020
Doing Life During COVID-19: Trauma + Isolation with Dr. Cynthia Eriksson and Dr. Alison Wong
Part of mission is to provide supportive resources for people with Narcolepsy and their families. During this time of massive daily life alterations, we want to continue to offer those resources. We are all going through a traumatic event together and as we are adapting to a new normal within our homes some may find it difficult to create structure. We created a miniseries called Doing Life During COVID-19 to address different aspects of daily life we may need extra support with during this time. Our fifth episode in our Doing Life During COVID-19 miniseries is addressing trauma, grief, isolation during the time of a global pandemic. Wake Up Narcolepsy's Executive Director, Claire Crisp has a conversation with Dr. Cynthia Eriksson, Associate Professor of Clinical Psychology and Chair the PsyD Program at Fuller Theological Seminary and Dr. Alison Wong, Assistant Professor of Marriage and Family Therapy and Director of Research of Fuller Psychological and Family Services at Fuller Theological Seminary. Claire, Dr. Eriksson and Dr. Wong cover how to recognize the emotions you are feeling during a traumatic global pandemic, tips on how to acknowledge your feelings, how to reduce stress, how to grieve and finally ways to find support. This conversation specifically focused on people with narcolepsy and families with PWN. You can follow us at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Doing Life During COVID-19: Food + Nutrition with Chef Andre Royal
05/02/2020
Doing Life During COVID-19: Food + Nutrition with Chef Andre Royal
Part of mission is to provide supportive resources for people with Narcolepsy and their families. During this time of massive daily life alterations, we want to continue to offer those resources. We are all going through a traumatic event together and as we are adapting to a new normal within our homes some may find it difficult to create structure. We created a miniseries called Doing Life During COVID-19 to address different aspects of daily life we may need extra support with during this time. Our fourth episode in our Doing Life During COVID-19 miniseries is addressing food + nutrition during the pandemic. Wake Up Narcolepsy's Executive Director, Claire Crisp has a conversation with , chef, entrepreneur, author and PWN. They discuss what food to focus on to boost your immune system, to give yourself grace, tips on how to meal prep, and staple pantry items to have. Andre and Claire also talk about Andre’s new coloring book that he authored and his son illustrated- . It may be a great way to relieve stress while practicing safer at home protocols. Here are some websites he recommends you check out to help you with cooking at home! ( tip: check the ratings and the comments of recipes you are interested in cooking) (Excellent tips overall, even on technique) (Narcolepsy Dietary & Lifestyle Changes) You can follow Andre on and . You can learn more about his new book The Hippo Critic on , and . You can follow us at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Doing Life During COVID-19: Pediatrics with Dr. Kiran Maski
05/01/2020
Doing Life During COVID-19: Pediatrics with Dr. Kiran Maski
Part of mission is to provide supportive resources for people with Narcolepsy and their families. During this time of massive daily life alterations, we want to continue to offer those resources. We are all going through a traumatic event together and as we are adapting to a new normal within our homes some may find it difficult to create structure. We created a miniseries called Doing Life During COVID-19 to address different aspects of daily life we may need extra support with during this time. Our third episode in our Doing Life During COVID-19 miniseries is addressing pediatric care during the pandemic. Wake Up Narcolepsy's Executive Director, Claire Crisp has a conversation with Dr. Kiran Maski, Director of Sleep Clinic and Department of Neurology at Boston Children’s Hospital, about pediatric treatment during the time of COVID-19. They discuss symptom management, the effects of homeschooling, what over the counter medication you should consult with your doctor about if your child is showing symptoms of the virus, and what research Dr. Maski is currently focusing on. Please see details below if you would like you and your child would like to participate in her current focus group. Focus Group Participants Needed to Develop a Pediatric Narcolepsy Patient Reported Outcomes Scale (PN-PROS) Narcolepsy is a chronic neurologic condition that tends to occur most frequently during childhood and adolescence. Currently there is no tool to assess the symptoms of narcolepsy that most significantly impact daily functioning of children with narcolepsy. We are conducting a study to develop a clinical tool health care providers can use to assess pediatric narcolepsy symptoms. Pediatric patients with narcolepsy and their parent/guardian are invited to take part in a 90 minute on-line, recorded focus group to discuss narcolepsy symptoms and the impact of the symptoms. As a thank you for participating in the focus group, you will receive a $50 gift card. Who is eligible for this study? Patients between the ages of 8-12 years with a diagnosis of narcolepsy AND one parent/guardian Participants must be able to understand the purpose of the study If you would like more information on study requirements, compensation, or eligibility, please call the Neurology Sleep Research team at 617-919-6212 or email us at You can follow us at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Doing Life During COVID-19: Exercise and Movement with Belle Hutt
04/25/2020
Doing Life During COVID-19: Exercise and Movement with Belle Hutt
Part of mission is to provide supportive resources for people with Narcolepsy and their families. During this time of massive daily life alterations, we want to continue to offer those resources. We are all going through a traumatic event together and as we are adapting to a new normal within our homes some may find it difficult to create structure. We created a miniseries called Doing Life During COVID-19 to address different aspects of daily life we may need extra support with during this time. Our second episode in our Doing Life During COVID-19 miniseries is addressing exercise and movement. In this episode, Wake Up Narcolepy's Executive Director, Director, Claire Crisp interviews Belle Hutt, a personal trainer, author and PWN about the importance of exercise and movement for PWNs. You can follow Belle at @bellehut on Instagram and you can get her book #EnergeticNarcoleptic on her website . You can follow us at on Instagram, on Instagram and Facebook and on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
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Doing Life During COVID-19: Mental Health and Mindfulness with Dr. Jason Ong
04/24/2020
Doing Life During COVID-19: Mental Health and Mindfulness with Dr. Jason Ong
Part of mission is to provide supportive resources for people with Narcolepsy and their families. During this time of massive daily life alterations, we want to continue to offer those resources. We are all going through a traumatic event together and as we are adapting to a new normal within our homes some may find it difficult to create structure. We created a miniseries called Doing Life During COVID-19 to address different aspects of daily life we may need extra support with during this time. Our first episode in our Doing Life During COVID-19 miniseries is addressing mental health and mindfulness practices. In this episode, Wake Up Narcolepy's Executive Director, Claire Crisp has a conversation with Dr. Jason Ong, Associate Professor in the Department of Neurology at Center for Circadian and Sleep Medicine at Northwestern University Feinberg School of Medicine, about mental health, depression, anxiety and mindfulness for people with narcolepsy, especially during this time of safer at home.
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