Narcolepsy 360

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-owne

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 C

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 Shanno

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

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 experien

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 Theologic

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

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

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 Inst

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 a

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

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 ca

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 t

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

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

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.

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

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 hash

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 doe

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 N