Narcolepsy 360 Podcast 

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, care-giver, research and clinical perspective. Each conversation draws on experiences, best practices and expert advice from patients, parents and doctors. From latest research to life-style tips, our podcasts shed light on the less discussed issues around narcolepsy.

Join Claire Crisp, our Executive Director, as she chats every week with people within our community.

Latest Episode

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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.

Season 2

About This Episode

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.

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About This Episode

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 intuned 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.

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About This Episode

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 Twitter.

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About This Episode

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!”

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About This Episode

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.

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About This Episode

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.

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About This Episode

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.

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About This Episode

 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  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.

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About This Episode

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/.

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Doing Life During COVID-19 Miniseries

Doing Life During COVID-19: Homeschooling During a Pandemic with Lindsay Jesteadt

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.

Listen on iTunes | Stitcher | Overcast | Google Play | Spotify | Or right here!

Doing Life During COVID-19: Pediatrics with Dr. Kiran Maski

In this episode, Wake Up Narcolepy’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.

To learn more about the focus group she discusses please go here.

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Doing Life During COVID-19: Exercise + Movement with Belle Hutt

In this episode, Wake Up Narcolepy’s Executive Director, Claire Crisp has a conversation with Belle Hutt @bellehutt, a personal trainer, author and PWN about the importance of exercise and movement for PWN, especially during this time of safer at home.

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Doing Life During COVID-19: Trauma + Isolation with Dr. Cynthia Eriksson and Dr. Alison Wong

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.

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Doing Life During COVID-19: Food + Nutrition with Chef Andre Royal

In this episode, 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!

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Doing Life During COVID-19: Mental Health + Mindfulness with Dr. Jason Ong

In this episode, Wake Up Narcolepy’s Executive Director, Claire Crisp has a conversation with Dr. Jason Ong, Associate Professor in the Department of Neurology at Center for Circadian and Sleep Medicine at Northwestern University Feinberg School of Medicine, about mental health, depression, anxiety and mindfulness for people with narcolepsy, especially during this time of safer at home.

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Season 1

Season 1 Episodes

About This Episode

Welcome to the new season of Narcolepsy 360! Claire Crisp is an author, advocate, Executive Director at Wake Up Narcolepsy and mother of a child living with narcolepsy. In this episode, Claire shares her journey on deciding to write a memoir about the process to get her daughter, Matilda, properly diagnosed with narcolepsy. She also shares that through writing the book, her passion and dedication to supporting and advocating for families who are navigating life narcolepsy grew. So much so that she took on the role of Executive Director at Wake Up Narcolepsy!

Claire also tells us some exciting things that are happening at Wake Up Narcolepsy and how you can get involved. You can follow Claire at @londonerinla on Instagram, @clairecrisp1 on Twitter, and @claireccrisp on Facebook. Be sure to check out Claire’s book and blog at claireccrisp.com. If you are interested in any of the events, services, and support Wake Up Narcolepsy offers, please go to www.wakeupnarcolepsy.org.

Listen on iTunes | Stitcher | Overcast | Google Play | Spotify | Or right here!

About This Episode

Dr. Kiran Maski is a Pediatric Neurologist that specializes in Sleep Medicine. She is the Director of the Neurology Sleep Clinic at Boston Children’s Hospital.

In this episode, Dr. Maski shares how she got into studying Sleep Medicine and how she leads the Sleep Clinic at Boston Children’s  Hospital. She also details how she brings in a group of other specialists that address the comorbidity that tends to come into to play with a narcolepsy diagnosis.

Dr. Maski is passionate about improving diagnostic delays and she has developed a screening tool to identify children and adolescents with narcolepsy and idiopathic hypersomnia in the community. With this tool,  she hopes to bring awareness about CNS hypersomnia conditions to children, parents, teachers, school nurses, and healthcare providers. She is partnering with Wake Up Narcolepsy and other sleep centers to validate this Hypersomnia Screening Tool validated.

If you are interested in participating in the study please click here.


We are grateful for Dr. Maski who works to raise awareness of narcolepsy and prompt referrals to appropriate pediatric specialists for faster diagnoses.


Disclaimer: Since recording this episode, Sodium oxybate has been approved by the FDA for pediatric use.

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About The Episode

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.

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About The Episode

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.

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About This Episode

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.

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About This Episode

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 groups.

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.

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About This Episode

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 atwww.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.

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About This Episode

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 Standford Medicine Center for Narcolepsy. You can follow Standford 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.

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About This Episode

Monica and David Gow are co-founders and board members of Wake Up Narcolepsy. They are parents of a young adult with narcolepsy. In this episode, Monica and David share their journey on getting their son properly diagnosed with narcolepsy. The struggle and gross negligence of doctors, who didn’t take their sons symptoms seriously, led them to start Wake Up Narcolepsy, a non-profit organization to raise research funds for a cure and raise awareness about narcolepsy.

This month they are celebrating the 10 year anniversary of Wake Up Narcolepsy. Monica and David also tell us about how it all started and what they hope Wake Up Narcolepsy offers in the next 10+ years.

You can follow Monica @wognom on Twitter. If you are interested in any of the events, services, and support Wake Up Narcolepsy offers, please go to www.wakeupnarcolepsy.org.

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About This Episode

Matt Hieb is the father of Madi, a child living with narcolepsy. In this episode, Matt recounts the journey on getting Madi properly diagnosed with narcolepsy. She was five when her symptoms started, so doctors didn’t take her symptoms as signs of a sleep disorder.

Since Madi’s diagnosis, the Hieb’s have been learning their new “normal”. Matt shares first-hand experience advocating for Madi in her school, to her doctors, and even to Madi herself. He touches on how narcolepsy effect Madi socially and how they have started multiple fundraising initiatives to promote awareness and offset travel cost for CCK.

Matt recommends two Facebook Groups- Parents of Children with Narcolepsy (United States) and Online Auction to Support Camp for Children with Narcolepsy

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About The Episode

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.

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About This Episode

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.

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About This Episode

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.

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About This Episode

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.

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About This Episode

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.

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About This Episode

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.

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About This Episode

Henry Nicholls is a person with narcolepsy, an author and science journalist specializing in evolutionary biology, conservation, the history of biology and sleep. His most recent publication is SLEEPYHEAD: The Neuroscience of a Good Night’s Rest.

In this episode, Henry shares about his own experience in getting his narcolepsy diagnosed and how he has been able to build a career through writing and journalism. He also details how in writing a book about sleep disorders, he was able to identify that he deals with multiple sleep disorders beyond narcolepsy, and also how this is common for people living with narcolepsy. He traveled all over the world interviewing sleep experts, clinicians, and researchers about sleep disorders– in many ways, it was clarifying and illuminating to see the science behind disorders that affect him. So much so that he has been able to achieve better sleeping habits and get actually restful sleep!

You can follow Henry @WayOfThePanda on Twitter and @SleepyheadByHenryNicholls on Facebook. If you are interested in learning more about his journalism and books, please go to http://henrynicholls.com.

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About This Episode

Gina Dennis is a PWN (person with narcolepsy), but is also a 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.

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About This Episode

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.

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About This Episode

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 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.

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About This Episode

Listen on iTunes | Stitcher | Overcast | Google Play | Spotify | Or right here!

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.

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About This Episode

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.

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About This Episode

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.

Listen on iTunes | Stitcher | Overcast | Google Play | Spotify | Or right here!

Podcast Archive

Julia Steiner

Dr. Eric Zhou

Andee Coppel

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.

The narcolepsy 360 Podcast are produced by Elizabeth Windom and sponsored by Jazz Pharmaceuticals.

What is Narcolepsy?

Narcolepsy is a life-long sleep disorder of the central nervous system characterized by the brain’s inability to regulate sleep-wake cycles.

Learn More

How is Narcolepsy diagnosed?

Diagnosing narcolepsy can be a time consuming and frustrating process.

Learn More

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