Narcolepsy 360

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.

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.

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.

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.

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.

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 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.

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.

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.

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.