Narcolepsy 360

Wake Up Narcolepsy

Narcolepsy 360 takes a panoramic perspective on an incurable, life-altering sleep disorder. It is a production of Wake Up Narcolepsy, in partnership with Jazz Pharmaceutical. Check out our website at wakeupnarcolepsy.org and follow us on social media at Wake up Narcolepsy on Facebook, and narcolepsy_360 on Instagram.

All Episodes

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 @saltytatertats on Instagram. Her art Instagram is @studioslumber. You can check out her writings about living with narcolepsy here.  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 @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Aug 12

29 min 30 sec

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 @tgow14 on Instagram and on Facebook. You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Jul 29

40 min 43 sec

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 @mamainthenow on Instagram, Facebook, Twitter and Pinterest. You can also check out her blog Mama In the Now here. Tove recommends joining The Facebook Group: Real Moms in the Now- A fun group for mothers from all stages of motherhood. Also, The Hygge Movement- 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 @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Jul 15

38 min 17 sec

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 @uniboricua 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 @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Jul 1

30 min 18 sec

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 College of Science), Nutritional Sciences (College of Agriculture and Life Sciences), and Clinical Translational Science. 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 his website. You follow Dr. Grandner @michaelgrandner on Twitter and @drgrandner on Facebook. You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Jun 10

45 min 16 sec

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 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 @fitniknarcoleptic on Instagram. You can read her memoir here Part 1 and Part 2. You can also read her blog here. You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Jun 3

51 min 54 sec

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 Know Narcolepsy awareness campaign. He participated in Project Sleep’s Rising Voices of Narcolepsy Program 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 = #worldsstrongestpersonhavingnarcolepsywithcataplexy. 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 @mhorsnell on Instagram and  @matthorsnell on Twitter. You can read his writings about narcolepsy for Health Union here. You can watch his Rising Voices of Narcolepsy Story Sharing Event. You can also watch his presentation, "Social Support and Counseling: Navigating Narcolepsy And Mental Health Comorbidities" during Wake Up Narcolepsy REAL: Navigating Narcolepsy and Mental Health Education Day Webinar. You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

May 20

44 min 42 sec

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 Sleep G, to share her experience with sleep health and narcolepsy. You can follow Grace at @sleepyg_zzz and @Grace_McGinnis 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 @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

May 6

30 min 3 sec

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 @geochurch and learn more about his research and work here. You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Apr 22

26 min 1 sec

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 @Ginna24. 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 @bellehutt on Instagram and Gina Dennis' page madcapnarcolepsy.com.” You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Apr 8

28 min 11 sec

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 here. You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Mar 25

25 min 28 sec

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 @travispavlicek and on Facebook @travis.pavlicek . 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 @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Mar 11

30 min 6 sec

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 @sincerelyymorgan and on Facebook @shamarla.morgan. You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Feb 25

26 min 54 sec

 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 here.  You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Feb 11

28 min 27 sec

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 @ginger_zee on Instagram, @gingerzeetv on Facebook, and @ginger_zee on Twitter. You can check out her books on her website. You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Jan 28

47 min 23 sec

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 @bellehutt on Instagram. You can check out her website (www.bellehutt.com) and her blog (https://energeticnarcoleptic.tumblr.com/). To join her Belle Hutt Live Community, you can learn more @bellehuttlivecommunity on Instagram.

Oct 2020

27 min 26 sec

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 @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Sep 2020

30 min 13 sec

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 @kreuziger_racing on Instagram, Kreuziger Racing and Emily Kreuziger on Facebook, and @girlswithsnowmobiles on YouTube. You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Sep 2020

39 min 56 sec

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 @gary.rutter82 on Instagram, @rut82 on Facebook and at @garyrutter13 on Twitter.  You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Aug 2020

41 min

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: https://www.wakeupnarcolepsy.org/research/clinical-trials/. Thank you to Dr. Hartman for joining us and to Takeda for their partnership and ongoing research into sleep-wake disorders like narcolepsy. You can follow Takeda at @TakedaPharma on Twitter. You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Jul 2020

16 min 48 sec

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 @lmt826 on Instagram and her family’s business, Cheurlin Champagne, @cheurlin1788   on Instagram. If you are interested in finding out more information about Cheurlin Champagne go to www.cheurlin.com. Lauren recommends Wide Awake and Dreaming by Julie Flygare. She is on the planning committee for World Narcolepsy Day with Project Sleep. 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 @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Jul 2020

42 min 3 sec

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! Click here to register for the webinar. 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 @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.  

Jul 2020

30 min 36 sec

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 @shannon.burkoth on Instagram and @sburkoth on Facebook. You can learn more about Shannon’s advocacy work at shannonburkoth.com. 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 Rising Voices of Narcolepsy program, Wake Up Narcolepy’s Online Support Groups, Narcolepsy 360 podcast, Wake Up Narcolepy’s Family Camp for CWN and Narcolepsy Network Annual Patient Conference. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Jun 2020

35 min 16 sec

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 @kelimain on Instagram. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Jun 2020

34 min 55 sec

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 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 @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

May 2020

48 min 29 sec

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 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 @narcolepsy_360 on Instagram,  @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

May 2020

39 min 56 sec

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 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 Andre Royal, 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- The Hippo Critic. 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! AllRecipes.com ( tip: check the ratings and the comments of recipes you are interested in cooking) Cookie + Kate Serious Eats- Corona Virus Cooking Guide on Beans (Excellent tips overall, even on technique) MadCap Narcolepsy (Narcolepsy  Dietary & Lifestyle Changes) You can follow Andre on Instagram and Facebook. You can learn more about his new book The Hippo Critic on Instagram, Facebook and Twitter. You can follow us at @narcolepsy_360 on Instagram,  @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

May 2020

26 min 24 sec

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 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 NeuroSleepResearch-dl@childrens.harvard.edu   You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

May 2020

22 min 57 sec

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 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 www.bellehutt.com. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.  

Apr 2020

20 min 32 sec

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 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.

Apr 2020

28 min 23 sec

Thaddeus Bath is a person with narcolepsy and is part of Wake Up Narcolepsy’s 2020 #TeamWUN for the Boston Marathon.  In this episode, Thaddeus shares how he was diagnosed with narcolepsy Type 2 in 2016. He discusses how sobriety helped realize that there was something bigger happening with his sleep issues. He also shares how fitness is an active passion of his. He is training for his black belt in Taekwondo, regularly goes to the gym to lift AND He runs...not just 5ks but half marathons, marathons and ULTRA marathons (100 miles long).  Thaddeus is currently part of the 2020 #TeamWUN for the Boston Marathon. Together they are training and working to raise $50,000 for narcolepsy research. Although a marathon is hardly a big feat for him anymore, it is an honor for him to participate in the Boston Marathon through spreading narcolepsy awareness and raising funds for narcolepsy research.  Since recording this interview, COVID-19 pandemic has affected all of our lives. The Boston Marathon is currently postponed until September 14th.. #TeamWUN is still proactively raising funds for narcolepsy research. You can support their fundraising effort here. You can follow Thaddeus at @thaddeus_bath on Instagram and @thaddeusbath on Facebook.  You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Mar 2020

29 min 56 sec

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 narcolepsy type 1. In this episode, Mike shares how a health crisis led to multiple diagnoses, including narcolepsy type 1. He discusses how he is adapting to a new lifestyle and despite his multiple comorbid conditions, he is able to continue to do fulfilling work. Mike also gives insight on how his family is adapting to the changes as well.  Mike has a great book coming out on April 28th, You’re a Miracle (and a Pain in the Ass),  which he and Claire dive into. Mike sees his position in the public eye as an opportunity to be  “open, honest and un-self-conscious” about his disabilities. You can follow Mike at @mikemchargue on Instagram, Twitter and Facebook. You can learn more about his new book and podcast at https://asksciencemike.com/. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Mar 2020

38 min 44 sec

Kevin 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 maintained a career as a sales professional by really understanding what is body needs in terms of medication, lifestyle habits, and a support system. He also shares how at certain points due to life and work, he’s had to prioritize which hobbies, golf and djing, he can spend time doing.  He wisely shares, “Don’t fight the disease, embrace it.” In this final episode of season one, both Kevin and Claire reflect on the growth of narcolepsy awareness, research breakthroughs, and medications in the past 10 years. They also share their hope and vision for the NEXT 10 years.  You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.

Aug 2019

44 min 23 sec

Dr. 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 professional service award, the Drs. C. and F. Demuth 11th Award for Young Investigators in the Neurosciences, the WC Dement Academic Achievement Award in sleep disorders medicine, the CINP and ACNP awards in neuropharmacology and the Jacobaeus prize.  In this episode, Dr. Mignot and Claire discuss what led him to research narcolepsy. He details the important research breakthroughs that have occurred the past couple of decades and also shares what his current focus is in research around narcolepsy. Claire and Dr. Mignot talk about a few causes of narcolepsy and why he enjoys being a clinician, treating people and children with narcolepsy. We are so grateful for the research and work Dr. Mignot is doing and how understanding narcolepsy as autoimmune disease can continue to open new doors for research, develop more effective medicine, and better the lives of people with narcolepsy. You can learn more about Dr. Emannuel Mignot's work at Stanford Medicine Center for Narcolepsy. You can follow Stanford Sleep Medicine at @stanfordsleepmedicine on Instagram and @stanfordsleepmed on Facebook. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.  

Aug 2019

45 min 8 sec

Kayla 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!  It wasn’t until she left the US to work in Spain, she realized she wasn’t thriving despite being on medication and managing symptoms. With the help of a doctor, she was able to reduce her medication by changing her diet and implementing other stress-relieving practices. To date, Kayla has traveled to AT LEAST 22 countries! Also, she is currently medication free. Kayla offers advice on how to travel with narcolepsy, and now is offering life coaching services to people with narcolepsy.  You can follow Kayla at  @nomadnarcolepsy on Instagram and Facebook. You can learn more about her coaching services and read her blog at  https://www.kaylamdouglas.com/. Kayla recommends Positively Narcolepsy facebook group and Going Beyond Coping blog, in her words, “As they have helped me so much with keeping a positive attitude and finding the most creative little life hacks.” She also recommends Gina Denis, aka Madcap Narcolepsy, if you're interested in learning more about the ketogenic diet. She also recommends the Rising Voices of Narcolepsy Program facilitated by Project Sleep. Because of Rising Voices, she felt empowered to publish this first writing piece -  Scared of the Dark: The Narcolepsy Symptoms that Nobody Talks About. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.

Jul 2019

28 min 31 sec

Charlie 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 at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.

Jul 2019

25 min 37 sec

Julie 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, found a non-profit, work in the public policy space, create international social campaigns, and develop programs that empower other pwns to become advocates. She also shares the exciting upcoming World Narcolepsy Day launch which takes place September 22, 2019. This episode is jam-packed with information about the programs and support Project Sleep is currently offering. Julie and Claire discuss what is going on with federal funding for sleep and narcolepsy research. How to use social media as an advocate, and what it’s like to write a memoir! It was such a pleasure to hear Julie's story and work. You can follow Julie at @REMRunner on Instagram & Twitter and @JulieFlygareAuthor on Facebook. You can learn more about advocacy work at www.julieflygare.com. You can also follow Project Sleeps efforts at @project_sleep on Instagram & Twitter and @ProjectSleepAwareness on Facebook. You can learn more about the programs, initiatives, and support Project Sleep offers at  www.project-sleep.com.   You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.

Jun 2019

53 min 39 sec

Dr. 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 psychosocial support for patients with narcolepsy. He also shares recent findings is research on how to improve sleep quality through behavioral sleep medicine. We are so grateful for the research and work Dr. Ong is doing and how understanding and effective way to treat mental health and sleep habits can improve the lives of people with narcolepsy. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.  

Jun 2019

33 min 22 sec

Elle 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, which you can access on falling-asleep.com. Elle also discusses the transition from school to maintain full-time work.   Elle has continued her creative advocacy endeavors by creating #NarcolepsyMemes. #NarcolepsyMemes are shareable images or gifs that usually speak about the reality of living with narcolepsy in a humorous but not belittling way. Through Instagram and #NarcolepsyMemes, Elle educates, advocates, and simply shares the day to day life of a PWN. She also has been honest and open about her mental health and how it does/does not relate to her narcolepsy.   It was such a pleasure to hear Elle’s story and work. You can follow Elle at @falling_asleep_elle on Instagram and @fallingasleepnarcolepsy on Facebook. You can learn more about narcolepsy on falling-asleep.com. Elle’s from Australia, so she recommends the Narcolepsy Support Australia Facebook Group. She also recommends the Rising Voices of Narcolepsy Program facilitated by Project Sleep.   You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.

May 2019

32 min 56 sec

Nicole 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 Claire why she never felt the need to hide the truth of her situation. Nicole also shares lifestyle tips she has learned along the way to her professional golfing career. She is a member of the WUN board of directors and leads the narcolepsy young adult online support group. She will be presenting at our upcoming Wake Up Narcolepsy Education Day in Rochester, Minnesota at Mayo Clinic. She will be talking about, “Living Well with Narcolepsy”. You can register for the event on our website: www.wakeupnarcolepsy.org You can follow Nicole at @nicole.jeray on Facebook. You can find out more about her professional golfing career at http://www.nicolejeray.com/.   You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.  

May 2019

41 min 4 sec

This 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 originally doctors believed he had narcolepsy. Betsy details the symptoms that she saw in her son that didn’t line up with narcolepsy symptoms and how an article on Dr. David Rye helped her realize he had IH. Betsy also shares about the programs, awareness work and resources the Hypersomnia Foundation provides to those who are seeking out more information about idiopathic hypersomnia. To find out more information about Idiopathic hypersomnia go to www.hypersomniafoundation.org. You can Follow Hypersomnia Foundation at @hypersomniafoundation on Instagram and Facebook and @hypersomnianews on Twitter. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.

Apr 2019

31 min 37 sec

This 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 with Idiopathic hypersomnia years to get properly diagnosed. He details the differences between IH and narcolepsy and current treatments for Idiopathic hypersomnia. He also shares the good work that Hypersomnia Foundation is doing to inform and spread awareness about Idiopathic hypersomnia. To find out more information about Idiopathic hypersomnia go to www.hypersomniafoundation.org. You can Follow Hypersomnia Foundation at @hypersomniafoundation on Instagram and Facebook and @hypersomnianews on Twitter. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.

Apr 2019

40 min 40 sec

Anna 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 comedy and improv while her cataplexy was slowly developing. Anna is determined to be an advocate for others with narcolepsy and spreading awareness through comedy that doesn’t perpetuate stereotypes or spread misinformation. Currently, she is developing a web series about a comedian trying to make in NYC while coming to terms with their narcolepsy and cataplexy. She is highlighting the funny and potentially awkward things that narcolepsy brings out in life. Anna also is the co-founder of Bluelaces Theatre Co. which creates immersive, multi-sensory theatrical experiences specifically designed for audiences with autism and other developmental differences. You can follow Anna at @marrzipanna on Instagram and Twitter. You can find out more about  Bluelaces Theatre Co. at  www.bluelaces.org/. She recommends participating in the Project Sleep's Rising Voices of Narcolepsy program. She also recommends doing CBT (cognitive behavioral therapy) as part of your symptom management and find a behavioral sleep specialist in your area. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.

Mar 2019

43 min 35 sec

Sara 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. Sara earned 2 masters-level degrees from Boston University in medical science and public health (epidemiology and biostatistics). She has conducted independent survey-based research studies on pregnancy perceptions and experiences, cognitive-related symptoms, and patient reported outcomes (the latter is called the Boston University Narcolepsy and Idiopathic Hypersomnia Patient Perspectives Study (BUNIHPPS). When Sara isn’t working on her passions related to patient advocacy, she is enjoying time spent with her family and adorable children, Brendan and Julia. Sara recommends the following Facebook Groups: Xyrem Support group, Pregnant people with narcolepsy and mothers, Narcolepsy/cataplexy education focused group and BUNIHPPS. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.

Mar 2019

41 min 35 sec

Andre 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 creations on Instagram which built his reputation in his community. This has led him to be sponsored by food companies but also launch a non-profit! Suddenly Sleepy Sleepwalk is an annual 5k that raises awareness about narcolepsy in Eugene, Oregon. It is a fun-filled family event and if you are close by please come out on March 10, 2019, and participate. This next year Suddenly Sleepy will become a non-profit and continue to expand its opportunities to raises awareness about narcolepsy. You can follow Andre at @chef_andre_royal on Instagram and @chefandreroyal on Facebook. You can also learn more about Suddenly Sleepy Sleepwalk here and follow along at @suddenlysleepysleepwalk5K on Instagram. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.

Feb 2019

31 min 35 sec

Tara 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 Narcolepsy’s 2019 Team for the Boston Marathon in honor of him. This opportunity has opened up her family to reflect and dialogue about their childhood. Her dad has even taken to writing down his memories. It is a sweet treat to hear their story through Tara. You can follow Tara and support her in her marathon training by donating here. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.

Feb 2019

25 min 55 sec

Erin 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 genetic testing to see if any of the other kids had the genetic marker. Kendall did and shortly after was diagnosed with narcolepsy. As a mother two children with narcolepsy, Erin details how she works to allow her family to be able to do what they love. When it comes to medication, schedule and schooling Kyla and Kendall have differing plans, but the entire family has adapted to the Keto diet. Erin now is a keto coach and also started a non-profit FACES (Families and Children Experiencing Symptoms) of Narcolepsy. You can follow Erin and learn more about FACES at https://facesofnarcolepsy.org/ and  @FACESofNarcolepsy on Facebook. You can also learn more about keto on Keto with Erin Facebook Group  You can follow us at @narcolepsy_360 on Instagram and  @wakeupnarcolepsy on Instagram, Twitter, and Facebook. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.

Jan 2019

36 min 7 sec

Kelsey 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 & Neurology department at Brigham & Women’s hospital. Kelsey shares with Claire how she has allowed herself to grieve since coming to terms with her narcolepsy, but also she hasn’t given up hope in becoming a doctor. Kelsey offers great advice on self-care and how she schedules her days to promote wakefulness. Oh, and Kelsey is currently training for the Boston Marathon! Kelsey is part of Wake Up Narcolepsy’s 2019 Team for the Boston Marathon and is working to raise $50,000 for narcolepsy research. You can follow Kelsey at @biddlekd on Instagram and Facebook. You can also follow her @kbiddle616 on Twitter. If you are interested in Kelsey’s “coming out” story click here. You can also support her in her marathon training by donating here. You can follow us at @narcolepsy_360 on Instagram and  @wakeupnarcolepsy on Instagram, Twitter, and Facebook. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.

Jan 2019

45 min 33 sec

Dr. 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 supporting the young adult patients who are transitioning into adult care. Claire and Dr. Murray discuss college accommodations, medication responsibility, life & family planning, and sleep hygiene. Dr. Murray also offers insight into how treatment may change or rather be fine-tuned with the digitization of sleep studies. He also shares simple ways you can utilize health tracking apps on smartphones to better gather data on individual’s daily symptoms and management of those symptoms. We are grateful for Dr. Murray’s insight and passion for treating PWN’s and supporting them to have a full life. You can follow us at @narcolepsy_360 on Instagram and  @wakeupnarcolepsy on Instagram, Twitter, and Facebook. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.

Jan 2019

26 min

Gina 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-carb eating lifestyle could mitigate symptoms. Naturally, she experimented with herself first and convinced her family to try this eating habit as well. Gina, her mom and son all are keto and it has brought greater energy and outlook to them all. Gina has since shared her findings with the narcoleptic community, became a Certified Health Coach, and launched a website called Madcap Narcolepsy. In her free time, she coaches others on holistic approaches and lifestyle changes to live a more wakeful life. You can follow Gina @madcapnarcolepsy on Facebook, Instagram, Youtube and @MadcapMiss on Twitter. Interested in learning more about Gina and her work? Go to madcapnarcolepsy.com. Interested in learning more about Keto? Join her Madcap Keto for Narcolepsy Facebook Group. You can follow us at @narcolepsy_360 on Instagram and  @wakeupnarcolepsy on Instagram, Twitter, and Facebook. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.

Jan 2019

57 min 25 sec