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Narcolepsy 360

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Narcolepsy 360

Wake Up Narcolepsy

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Every person diagnosed with narcolepsy embarks on a unique journey. There is no standard path, and for many, this proves to be among the most challenging aspects of the disorder. The Narcolepsy 360 podcast is a series of interviews that take a panoramic view of narcolepsy from the patient, caregiver, research and clinical perspective. Each conversation draws on experiences, best practices and expert advice from patients, parents and doctors. From the latest research to lifestyle tips, our po ...
 
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Tatiana Maria Corbitt is a writer, artist and advocate. Tatiana is also a person with Type 1 Narcolepsy. In this episode, Tatiana and Claire discuss how the onset of her symptoms occurred after having the flu, while in the first year of college. She was diagnosed in 2017 while studying Applied Biological Studies. Since she experienced such a drasti…
 
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 …
 
Tove Maren Stakkestad is a Danish American Writer and Blogger. She is currently sharing her experience of being a mom of 4 boys on her blog Mama In The Now. Tove is also a person with Type 1 Narcolepsy. In this episode, Tove reflects that she believes both her father and grandfather had narcolepsy and she had a sleepy childhood. When her mother too…
 
Desireé Gorbea-Finalet is a person with Type 1 Narcolepsy and a student of Peace and Conflict Studies. In this episode, Claire and Desireé discuss how because she was labeled as a “good sleeper” as a young child that it may have contributed to a delayed diagnosis. Growing up in Puerto Rico, her family had a history of migraines so when she sought o…
 
Dr. Grandner is the Director of the Sleep and Health Research Program at the University of Arizona, Director of the Behavioral Sleep Medicine Clinic at the Banner-University Medical Center, and an Associate Professor in the Department of Psychiatry at the UA College of Medicine, with joint appointments in the Departments of Medicine, Psychology (UA…
 
Nicole Kenyon is a person with Type 1 Narcolepsy. She is also a multi-faceted narcolepsy advocate. She is an author of a memoir, a blogger, legislative advocate, personal trainer and the face of @fitniknarcoleptic Instagram where she shares workout routines. In this episode, Nicole shares how she struggled with excessive sleepiness most of her chil…
 
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…
 
Grace McGinnis is a college student studying Pre Med, a Division 1 college athlete and also a person with Type 1 Narcolepsy. In this episode, Grace and Claire discuss how Grace functioned as a “sleepy child” and how she was aware at a young age that her experience of sleepiness wasn’t normal. In her sophomore year of high school, her health and per…
 
In this episode, we talk about observability from a performance engineering perspective. We talk about how this new emphasis on observability is a game changer for performance engineering, typically once viewed as a solo activity, but not something that benefits the whole team. Some good quotes: "the whole, the whole rationale for investing in obse…
 
Dr. George Church is a Professor at Harvard & MIT, co-author of 580 papers, 143 patent publications & the book "Regenesis"; developed methods used for the first genome sequence (1994) & million-fold cost reductions since (via fluor-NGS & nanopores), plus barcoding, DNA assembly from chips, genome editing, writing & recoding; co-initiated BRAIN Init…
 
Ginna Freehling is a neuroscience graduate and works in cancer clinical research at a biotech company. She is also a PWN. In this episode, Ginna shares how at the age of twenty she started experiencing symptoms of narcolepsy. In the process of trying to figure out what was going on, she was discouraged by her sleep specialist to not seek a formal d…
 
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 …
 
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 …
 
Shamarla Morgan is a PWN and a narcolepsy advocate. In this episode, Shamarla shares how despite a self-diagnosis of narcolepsy type 1 within the first year of her symptoms, it took four years for her to receive a proper diagnosis. She experienced many frustrating interactions with doctors who didn’t take her communication about the disorder and he…
 
Dr. John Peever is a professor of Cell and Systems Biology at the University of Toronto. In this episode, Dr. Peever shares why he got into narcolepsy and other sleep disorders research. He shares what his latest research is focusing on and how sleep research may influence future narcolepsy treatments. In his efforts through research and the Canadi…
 
Ginger Zee is the chief meteorologist for ABC News, author, advocate and a person with narcolepsy. In this episode, Ginger shares her journey to being diagnosed with narcolepsy type 2. She also shares about how her mental health was affected by her drug prescriptions to her narcolepsy symptoms. Claire and Ginger discuss how she handles her narcolep…
 
In this episode, we talk about large projects, how to explain our job to non-technical people within an organisation and creating a shared vision of success to enrich the UAT process. We also talk about Mentoring, Enthusiasm, Empathy and Community.بقلم Anne-Marie Charrett
 
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 c…
 
In this episode we talk a lot about learning, different approaches to learning, being a catalyst within an organisation and sitting with discomfort. Some classic Maaret quotes: "Automation is how we document Exploratory Testing" "FAIL -> First Attempt at Learning" "Accepting the discomfort of not knowing is a skill" Next episode completes the discu…
 
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 i…
 
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, t…
 
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 ag…
 
We continue our conversation with Beth Skurrie co-founder of pactflow.io and all round awesome person. We continue talking about PACT applied, making conscious decisions around tool selection and keeping tech relevant. Some 'more' Bethesque quotes "end to end test are the wrong type of tests to check low level, request and response fields" "what it…
 
In this episode we talk to Beth Skurrie co-founder of pactflow.io and all round awesome person. We talk about quality (of course!) and what quality is from a coding perspective. The difficulty in using tools to assist in quality. Levels of abstraction and the test automation pyramid and how its useful in trade offs. Plus some stuff on when to write…
 
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 s…
 
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 …
 
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 sh…
 
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 medic…
 
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 p…
 
This is the final part of a three part chat (for the moment) with Lisa Crispin, Janet Gregory and Anne Marie Charrett. In it we talk about what's next for agile teams and testing and the importance of taking small steps. We also mention not being taken in by smoke and mirrors, resilience, observability and complexity.…
 
This is the second part of a three part chat with Lisa Crispin, Janet Gregory and Anne Marie Charrett. In it we talk about remote working and coaching remotely, consulting vs coaching, finding a Purpose, Pomodoro and taking small steps when in unchartered waters. Plus, more about donkeys.بقلم Anne-Marie Charrett
 
This is the first part of a three part chat with Lisa Crispin, Janet Gregory and Anne Marie Charrett. In it we talk about the similarities between quality coaching and whole-team quality and we also talk about Elephants and Donkeys!بقلم Anne-Marie Charrett
 
Part 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 difficul…
 
Part 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 difficul…
 
Part 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 difficul…
 
Part 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 difficul…
 
In this episode we speak to Tim O'Brien from Wargaming Sydney. Heard of the game "World of Tanks"? It was brought to you by these lovely folks. I wanted to chat with Tim to give us an understanding how quality coaching fits into this unique context. We talk metrics (in particular rework), we talk about the key to being influential. Also how teams c…
 
Part 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 difficul…
 
Part 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 difficul…
 
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 p…
 
Mike 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 …
 
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