26 episodes

Every person diagnosed with narcolepsy embarks on a unique journey. There is no standard path, and for many, this proves to be among the most challenging aspects of the disorder.

The Narcolepsy 360 podcast is a series of interviews that take a panoramic view of narcolepsy from the patient, caregiver, research and clinical perspective. Each conversation draws on experiences, best practices and expert advice from patients, parents and doctors. From the latest research to lifestyle tips, our 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.

Narcolepsy 360 wakeupnarcolepsy.org

    • Science

Every person diagnosed with narcolepsy embarks on a unique journey. There is no standard path, and for many, this proves to be among the most challenging aspects of the disorder.

The Narcolepsy 360 podcast is a series of interviews that take a panoramic view of narcolepsy from the patient, caregiver, research and clinical perspective. Each conversation draws on experiences, best practices and expert advice from patients, parents and doctors. From the latest research to lifestyle tips, our 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.

    Narcolepy 360: Kevin Cosgrove

    Narcolepy 360: Kevin Cosgrove

    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.

    • 44 min
    Narcolepsy 360: Dr. Emmanuel Mignot

    Narcolepsy 360: Dr. Emmanuel Mignot

    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.
     

    • 45 min
    Narcolepy 360: Kayla Douglas

    Narcolepy 360: Kayla Douglas

    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.

    • 28 min
    Narcolepsy 360: Charlie Bain

    Narcolepsy 360: Charlie Bain

    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.

    • 25 min
    Narcolepy 360: Julie Flygare

    Narcolepy 360: Julie Flygare

    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.

    • 53 min
    Narcolepsy 360: Dr. Jason Ong

    Narcolepsy 360: Dr. Jason Ong

    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.
     

    • 33 min

Customer Reviews

Harsh divine ,

Narcolepsy 360

This series is so informative. I enjoyed learning from the different perspectives of narcolepsy from the PWN to the science behind it. Looking forward to the second season.

kethans ,

Such a treasure for those affected by narcolepsy

As a PWN, I am always searching for stories of others with narcolepsy. I absolutely loved this podcast and hope there is more to come!

Winkebach ,

Refreshing, Emotional, and Vindicating

Narcolepsy is rare enough, that I have no one who can relate with my life experiences. It is refreshing, emotional, and vindicating to find and hear from others who know what life is like with narcolepsy and cataplexy. Two Thumbs Up!!!

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