Narcolepsy 360
58 episodes - English - Latest episode: over 2 years ago - ★★★★★ - 59 ratingsEvery 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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Episodes
Narcolepsy 360: Tatiana Maria Corbitt
August 12, 2021 13:00 - 29 minutes - 40.5 MBTatiana 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 ac...
Narcolepsy 360: Thomas Gow
July 29, 2021 13:00 - 40 minutes - 56 MBThomas 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...
Narcolepsy 360: Tove Maren Stakkestad
July 15, 2021 13:00 - 38 minutes - 58 MBTove 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...
Narcolepsy 360: Desireé Gorbea-Finalet
July 01, 2021 13:00 - 30 minutes - 47.1 MBDesireé 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 excessiv...
Narcolepsy 360: Dr. Michael Grandner
June 10, 2021 13:00 - 45 minutes - 67.6 MBDr. 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 College of Science), Nutritional Sciences (College of Agriculture and Life Sciences), and Clinical Translational Science. His research focuses on...
Narcolepsy 360: Nicole Kenyon
June 03, 2021 13:00 - 51 minutes - 76.7 MBNicole 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 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 weigh...
Narcolepsy 360: Matthew Horsnell
May 20, 2021 13:00 - 44 minutes - 66.8 MBMatthew 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,...
Narcolepsy 360: Grace McGinnis
May 06, 2021 17:00 - 30 minutes - 46.7 MBGrace 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 ...
Narcolepsy 360: Dr. George Church
April 22, 2021 17:00 - 26 minutes - 41.2 MBDr. 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, ...
Narcolepsy 360: Ginna Freehling
April 08, 2021 17:00 - 28 minutes - 44.2 MBGinna 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 ...
Narcolepsy 360: Dr. Jennifer Gudeman
March 25, 2021 17:00 - 25 minutes - 40.4 MBDr. 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 th...
Narcolepsy 360: Travis Pavlicek
March 11, 2021 18:00 - 30 minutes - 46.8 MBTravis 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...
Narcolepsy 360: Shamarla Morgan
February 25, 2021 18:00 - 26 minutes - 42.4 MBShamarla 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 advoca...
Narcolepsy 360: Dr. John Peever
February 11, 2021 18:00 - 28 minutes - 44.5 MBDr. 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 Peeve...
Narcolepsy 360: Ginger Zee
January 28, 2021 18:00 - 47 minutes - 70.5 MBGinger 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. Ginge...
Narcolepsy 360: Belle Hutt
October 01, 2020 17:00 - 27 minutes - 43.2 MBBelle 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 wi...
Narcolepsy 360: Dr. Indra Narang
September 17, 2020 17:00 - 30 minutes - 47 MBDr. 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 wha...
Narcolepsy 360: Emily Kreuziger
September 03, 2020 17:00 - 39 minutes - 60.3 MBEmily 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 preg...
Narcolepsy 360: Gary Rutter
August 20, 2020 17:28 - 41 minutes - 61.8 MBGary 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 oc...
Narcolepsy 360: Dr. Deborah Hartman
July 30, 2020 17:00 - 16 minutes - 28.5 MBDr. 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, ...
Narcolepsy 360: Lauren Thomas
July 16, 2020 19:00 - 42 minutes - 63.2 MBTW: 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 ...
Narcolepsy 360: Dr. David Ingram
July 02, 2020 17:00 - 30 minutes - 47.4 MBDr. 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 ...
Narcolepsy 360: Shannon Burkoth
June 18, 2020 18:00 - 35 minutes - 53.9 MBShannon 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. ...
Narcoley 360: Kelly Main
June 04, 2020 20:00 - 34 minutes - 53.4 MBKelly 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...
Doing Life During COVID-19: Homeschooling During a Pandemic with Lindsay Jesteadt
May 09, 2020 23:00 - 48 minutes - 71.9 MBPart of Wake Up Narcolepsy’s 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 ...
Doing Life During COVID-19: Trauma + Isolation with Dr. Cynthia Eriksson and Dr. Alison Wong
May 08, 2020 00:00 - 39 minutes - 60.2 MBPart of Wake Up Narcolepsy’s 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 ...
Doing Life During COVID-19: Food + Nutrition with Chef Andre Royal
May 02, 2020 23:00 - 26 minutes - 41.7 MBPart of Wake Up Narcolepsy’s 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 ...
Doing Life During COVID-19: Pediatrics with Dr. Kiran Maski
May 01, 2020 00:00 - 22 minutes - 36.9 MBPart of Wake Up Narcolepsy’s 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 ...
Doing Life During COVID-19: Exercise and Movement with Belle Hutt
April 25, 2020 23:00 - 20 minutes - 33.6 MBPart of Wake Up Narcolepsy’s 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 su...
Doing Life During COVID-19: Mental Health and Mindfulness with Dr. Jason Ong
April 24, 2020 00:00 - 27 minutes - 43.4 MBPart of Wake Up Narcolepsy’s 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 su...
Narcolepy 360: Thaddeus Bath
March 26, 2020 17:00 - 29 minutes - 46.5 MBThaddeus 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,...
Narcolespy 360: Mike McHargue
March 12, 2020 17:00 - 38 minutes - 58.6 MBMike McHargue is a bestselling author of Finding God in the Waves, and soon to be released You’re a Miracle (and a Pain in the Ass). He is the host of Ask Science Mike podcast and co-founded The Liturgist Podcast. He also is an international speaker, science advisor and story consultant for film and television. This past year he was diagnosed with narcolepsy type 1. In this episode, Mike shares how a health crisis led to multiple diagnoses, including narcolepsy type 1. He discusses how he ...
Narcolepy 360: Kevin Cosgrove
August 29, 2019 17:00 - 44 minutes - 62.7 MBKevin Cosgrove is the Co-founder of Wake Up Narcolepsy, Biologic/Dermatology Sales Professional, and a PWN. In this episode, Kevin details his diagnosis process which led him to found Wake Up Narcolepsy with Monica and David Gow, with the intention to spread awareness about narcolepsy and fund narcolepsy research. He sheds light now the processes to diagnosis can be delayed due to individuals learning to adapt and mask their symptoms. Claire and Kevin discuss how over the years, he has ...
Narcolepsy 360: Dr. Emmanuel Mignot
August 15, 2019 17:00 - 45 minutes - 63.8 MBDr. Emmanuel Mignot is Professor of Psychiatry and Behavioral Sciences at Stanford University and Director of the Stanford Center for Sleep Sciences and Medicine. He is internationally recognized for discovering the cause of narcolepsy. Dr. Mignot has received numerous research grants and honors, including National Sleep Foundation and National Institute of Health Research Awards, Howard Hughes Medical Institute Investigator and McKnight Neuroscience awards, the Narcolepsy Network profess...
Narcolepy 360: Kayla Douglas
July 25, 2019 17:00 - 28 minutes - 41 MBKayla Douglas, known as @nomadnarcolepsy on Instagram, is a person with narcolepsy, a narcolepsy life coach and an extensive world traveler! In this episode, Kayla details her childhood with narcolepsy that led to diagnosis. As a child, she loved to read about the world and in her mind, she traveled all over. It was in college that she was able to make that dream a reality through studying abroad. After that first bit of travel she was motivated to travel more and boy did she travel! ...
Narcolepsy 360: Charlie Bain
July 11, 2019 17:00 - 25 minutes - 37 MBCharlie Bain is a person with narcolepsy, who first noticed symptoms of narcolepsy at 19. In this episode, Charlie shares his experience of getting diagnosed with narcolepsy and taking time off from school to adapt to a new lifestyle. He also advises on ways to utilize accommodations during college and he shares his experience transitioning into a career. Charlie also offers some great lifestyle tips and creative ways to integrate napping while having a fulltime job. You can follow us a...
Narcolepy 360: Julie Flygare
June 20, 2019 17:00 - 53 minutes - 74.5 MBJulie Flygare is an author, Founder, CEO & President of Project Sleep, an advocate and a person with narcolepsy. She started the Narcolepsy Not Alone Campaign, the Jack and Julie Scholarships for college-age students with narcolepsy and the Rising Voices of Narcolepsy Program. In this episode, Julie shares her diagnosis story which led her to change her career trajectory and embark on becoming a vocal advocate for people with narcolepsy. Her advocacy has allowed her to write a memoir, foun...
Narcolepsy 360: Dr. Jason Ong
June 06, 2019 17:00 - 33 minutes - 46.7 MBDr. Jason Ong is an Associate Professor in the Dept of Neurology and the Center for Circadian and Sleep Medicine at the Northwestern University Feinberg School of Medicine. In this episode, Dr. Ong and Claire discuss narcolepsy and mental health. Dr Ong’s primary research interest is focused on non-pharmacological sleep disorders, including cognitive-behavioral therapy (CBT) and mindfulness meditation. He has a clinical practice where he delivers CBT for insomnia and provides psychosocia...
Narcolepsy 360: Elle Wales
May 23, 2019 17:00 - 32 minutes - 46.1 MBElle Wales is a graphic designer, known as Falling Asleep Elle (on the internet), creator of narcolepsy memes and a person with narcolepsy. In this episode, Elle shares her diagnosis journey with Claire and how she navigated her university education while figuring out how to best manage symptoms. In the midst of all these transitions, Elle’s imagination, creative talents, passion for advocacy and honesty influenced her to first create a narcolepsy guidebook for her honours project, whi...
Narcolepsy 360: Nicole Jeray
May 09, 2019 17:00 - 41 minutes - 57.3 MBNicole Jeray is an LPGA tour player and long-time advocate for narcolepsy awareness. Since graduating from Northern Illinois University, she has played professional golf worldwide for 22 years. Nicole is her own agent and has negotiated all of her sponsorship arrangements. In this episode, we hear Nicole’s diagnosis journey and how she navigated her professional career while managing symptoms of narcolepsy. Nicole has always been vocal and honest about her condition and discusses with Clai...
Narcolepsy 360: Betsy Ashcraft
April 25, 2019 17:00 - 31 minutes - 44.3 MBThis is this second of a two-episode series in our deep dive into idiopathic hypersomnia and potential relation to type 2 narcolepsy. This week we are speaking Betsy Ashcraft. Betsy Ashcraft is a retired lawyer who practiced law for over 20 years specializing in securities and corporate litigation, and capital markets. She is also the mother of a person with idiopathic hypersomnia. In this episode, Claire and Betsy discuss the journey to get her son properly diagnosed with IH and how ori...
Narcolepsy 360: Dr. David Rye
April 11, 2019 17:00 - 40 minutes - 56.7 MBThis is this first of a two-episode series in our deep dive into Idiopathic hypersomnia and potential relation to type 2 narcolepsy. This week we are speaking Dr. David Rye. Dr. David Rye is Professor of Neurology at Emory University, board certified in Neurology and Sleep Medicine. Dr. Rye is also chair of the Scientific Advisory Board for Hypersomnia Foundation. In this episode, Claire and Dr. Rye discuss Idiopathic hypersomnia, another complex sleep disorder that often takes people wi...
Narcolepsy 360: Anna Leigh Marr
March 30, 2019 17:00 - 43 minutes - 60.7 MBAnna Leigh Marr is an actor, writer, voice-over artist and a person with Narcolepsy. In this episode, Anna shares her diagnosis journey whereupon it took 4 years to get properly diagnosed and all they while she completed her BA at Northwestern University. Claire and Anna discuss our culture’s glorification of the overworked/underslept lifestyle and how it might confuse those experiencing symptoms of narcolepsy. Anna also shares her experience of being an actor and writer with a focus on co...
Narcolepsy 360: Sara Kowalczyk
March 14, 2019 17:00 - 41 minutes - 57.9 MBSara Kowalczyk is a mother and women’s health patient advocate, clinical researcher, regulatory writer and person with Narcolepsy. In this episode, Sara shares her diagnosis story but also her decision and experience in becoming a mother. Claire and Sara discuss how Sara developed an expertise on narcolepsy and women’s health while going through two pregnancies with narcolepsy/cataplexy. She conducted a survey and has led support groups surrounding narcolepsy, pregnancy and motherhood. Sa...
Narcolepsy 360: Andre Royal
February 28, 2019 18:00 - 31 minutes - 44.2 MBAndre Royal is a father, chef, entrepreneur, and person with Narcolepsy. In this episode, Andre shares his complicated journey to get properly diagnosed since he was living with multiple complicated medical conditions. Getting diagnosed created a career crossroads for Andre. Since then, Andre has worked to find a career that will best support him and his schedule but also fulfill him in the work that he is doing. Feeling inspired by the power of social media, Andre began posting food creat...
Narcolepsy 360: Tara Stuart
February 14, 2019 18:00 - 25 minutes - 36.5 MBTara Stuart is a mother, teacher, daughter of a person with narcolepsy and currently training for the Boston Marathon. In this episode, Tara shares her memories of growing up with her father having narcolepsy and how it affected their family. Tara’s dad wasn’t properly diagnosis well into his late 20s early 30s. He worked for his family’s construction company where he was able to accommodate his need to take naps. Tara’s dad is turning 90 this year and she decided to join Wake Up Narcoleps...
Narcolepsy 360: Erin Carey
January 31, 2019 17:55 - 36 minutes - 25.7 MBErin Carey is a mother of five girls and two are CWN (children with narcolepsy). When Kyla started showing symptoms of narcolepsy Erin initially thought it was diabetes. When Kyla communicated she was falling asleep at school, Erin knew due to her sister’s own diagnosis of narcolepsy, that Kyla most likely had narcolepsy as well. In this episode, Erin shares how once Kyla was properly diagnosed she knew that Kendall, Kyla’s younger sister, also had narcolepsy. Erin had her family get genet...
Narcolepsy 360: Kelsey Biddle
January 25, 2019 00:47 - 45 minutes - 64.1 MBKelsey Biddle is a PWN (person with narcolepsy) that was diagnosed, just over a year ago, with Type 1 Narcolepsy. In this episode, Kelsey shares the unique journey of being diagnosed within six weeks of the onset of symptoms. Kelsey has taken this past year to fully transition into her “new normal” by finding the right medications and creating a supportive schedule that allows her to do her job well as a clinical research coordinator in an Alzheimer’s research group in the Psychiatry & Neu...
Narcolepsy 360: Dr. Brian Murray
January 17, 2019 16:23 - 25 minutes - 19.5 MBDr. Brian Murray is an Associate Professor, Neurology and Sleep Medicine at University of Toronto Department of Medicine, Chair of Royal College Specialty Committee in Neurology and Head of Division of Neurology & Chair of Research Ethics Board Sunnybrook Health Sciences Center. Dr. Murray cares mostly for adult people with narcolepsy and also, young adults with narcolepsy transitioning from pediatrics into adult care. In this episode, Dr. Murray shares his expertise and approach to suppor...
Narcolepsy 360: Gina Dennis
January 11, 2019 18:44 - 57 minutes - 80 MBGina Dennis is a PWN (person with narcolepsy), but is also an FWN (family with narcolepsy), since her mother, son and ex-husband all have narcolepsy. In this episode, Gina shares the decades-long journey to be diagnosed with narcolepsy. She remembers having narcoleptic symptoms as early as 5 years old but wasn’t diagnosed until her thirties. Once her son was diagnosed, she deep dived on the internet to help finds ways to mitigate his symptoms. In her research, she found adapting to a low-...