Thomas Gow is a Client Experience Analyst at TruDataRx. Thomas is also a person with Narcolepsy Type 1 and one of the inspirations to the creation of Wake Up Narcolepsy.

In this episode, Thomas shares his experience of diagnosis at the age of 10 and how it wasn’t until he began to experience cataplexy that something bigger was going on beyond just being sleepy.

He shares how he navigated his educational journey from middle school to grad school, playing sports and now working a full-time job. In his acceptance of Narcolepsy, he took logical risks to see how his body could handle different life experiences. Routines, goals, support systems and logical risks have all played a part in helping him embrace his Narcolepsy. 

He believes Narcolepsy has allowed him to grow in a way that gives him a completely different perspective on the world. He says, “[Narcolepsy] is along the ride to where you want to go in life.” It isn’t driving you. 

You can follow Thomas @tgow14 on Instagram and on Facebook.

Tove Maren Stakkestad is a Danish American Writer and Blogger. She is currently sharing her experience of being a mom of 4 boys on her blog Mama In The Now. Tove is also a person with Narcolepsy Type 1.

In this episode, Tove reflects that she believes both her father and grandfather had Narcolepsy and she had a sleepy childhood. When her mother took her to the doctors they thought it was childhood epilepsy and didn’t require further treatment. When she started falling asleep during client meetings, she sought out a doctor’s insight about her sleepiness. It was then she was diagnosed with Narcolepsy Type 1.

As her fourth child was on the way, Tove’s husband suggested that she start a blog as a means to creating an income and assist her in the ability to stay home and raise her kids. She writes about motherhood with honesty and humor. 

Tove is currently unmedicated and lives a lifestyle she calls unapologetic self-care. There is so much to learn through Tove’s blog but Claire asks specifically about a post where Tove describes how Narcolepsy has made her a better parent.  

You can follow Tove @mamainthenow on Instagram, Facebook, Twitter and Pinterest. You can also check out her blog Mama In the Now here.

Tove recommends joining The Facebook Group: Real Moms in the Now– A fun group for mothers from all stages of motherhood. Also, The Hygge Movement– This is a cozy drama-free group of women who embrace the Danish lifestyle of “hygge” (mindfulness and coziness). We share book recommendations, arts and crafts – just all the things that make you feel warm and fuzzy inside.

Desiree Gorbea-Finalet is a person with Narcolepsy Type 1 and a student of Peace and Conflict Studies. 

In this episode, Claire and Desiree discuss how because she was labeled as a “good sleeper” as a young child that it may have contributed to a delayed diagnosis. Growing up in Puerto Rico, her family had a history of migraines so when she sought out help her doctors and neurologists focused on the migraines rather than her excessive daytime sleepiness. 

Despite struggling with excessive daytime sleepiness, Desiree was always super productive during her wakefulness. She participated in extracurricular activities and completed both high school and her undergrad within three years. In 2017, after the destructive effects of Hurricane Maria, Desiree came to the States. Since coming to the States she has been able to receive better Narcolepsy care and get plugged into a local support group.

Desiree encourages everyone to listen to their bodies and intuition and to not give up advocating for yourself until you find out what is “wrong” with your body. 

You can follow Desiree @uniboricua on Instagram. She recommends the following Facebook groups — Foothills Narcolepsy Support Group (Specifically for individuals living in North-Western North Carolina and Southern Virginia), Narcolepsy Humor, and Narcolepsy Support Group.

Dr. Grandner is the Director of the Sleep and Health Research Program at the University of Arizona, Director of the Behavioral Sleep Medicine Clinic at the Banner-University Medical Center, and an Associate Professor in the Department of Psychiatry at the UA College of Medicine, with joint appointments in the Departments of Medicine, Psychology (UA College of Science), Nutritional Sciences (College of Agriculture and Life Sciences), and Clinical Translational Science. His research focuses on how sleep and sleep-related behaviors are related to cardiovascular disease, diabetes, obesity, neurocognitive functioning, mental health and longevity.

In this episode, Claire and Dr. Grandner discuss how although he is a clinical psychologist, his focus is on sleep behavior. He is interested in understanding collectively our relationship with sleep and what causes disruptions in our sleep and therefore affects our day-to-day functions.

Dr. Grandner shares what his lab is currently studying, but also deep dives into how sleep greatly affects our mental health, mental wellness, memory and mental acuity. He shares his insight on how diet, nutrition and sleep all intricately interact. Dr. Grandner is constantly asking, “How do we improve people’s sleep?”

We really appreciate learning about sleep and sleep health from a sleep behavioral approach, thank you Dr. Grandner for your time and sharing with our community.

 To learn more about Dr. Grandner’s research and work you can check his website. You follow Dr. Grandner @michaelgrandner on Twitter and @drgrandner on Facebook.

Nicole Kenyon is a person with Narcolepsy Type 1. She is also a multi-faceted Narcolepsy advocate. She is an author of a memoir, a blogger, legislative advocate, personal trainer and the face of @fitniknarcoleptic Instagram where she shares workout routines.

In this episode, Nicole shares how she struggled with excessive sleepiness most of her childhood, but because she was very athletic it was often glossed over. Multiple times she went to doctors seeking help but whether it was her weight or her active lifestyle, they didn’t listen and her diagnosis was delayed. It wasn’t until college, while talking to a fellow rugby teammate who recently was diagnosed with Narcolepsy did she find the answer to her experience as well.

Despite knowing she had Narcolepsy it still took a while before getting diagnosed, and the doctor who initially oversaw her treatment didn’t provide effective care. Today, Nicole has a great sleep specialist. Because of her arduous experience, Nicole is passionate about advocating for CWN. 

Nicole in early 2020 was diagnosed with MS. This has brought about new questions on whether MS caused her Narcolepsy. Nicole has invested in herself through fitness and a healthy lifestyle. She offers insight into the importance of working out for health reasons and learning to love yourself. 

You can follow Nicole at @fitniknarcoleptic on Instagram. You can read her memoir here Part 1 and Part 2. You can also read her blog here.

Matthew Horsnell is a person with Narcolepsy Type 1. He also is a multi-faceted Narcolepsy advocate. He’s a speaker, a blogger, legislative advocate and Narcolepsy support group leader.

In this episode, Matthew and Claire discussed how becoming a dad pushed him to figure out his extreme daytime sleepiness that he dealt with throughout his childhood.  He, in his words, “passed the test with flying colors,” and was diagnosed with Narcolepsy Type 1. 

After navigating living with Narcolepsy, being a parent and generally being an adult for a few years, Matthew realized he wanted to be vocal about his Narcolepsy and spread Narcolepsy awareness. Matthew is a generous Narcolepsy advocate. He first entered into advocacy through the Know Narcolepsy awareness campaign. He participated in Project Sleep’s Rising Voices of Narcolepsy Program to help him confidently speak about living with Narcolepsy. Today, he advocates by speaking at events, webinars and participating as a legislative advocate in DC. He writes blogs on Health Union about living with Narcolepsy. He facilitates a weekly online support group through Wake Up Narcolepsy.  He also is an active social media advocate posting and spreading awareness with the hashtag =#worldsstrongestperson havingnarcolepsywithcataplexy.

Matthew shares about how exercise, therapy, support groups, and connecting with the Narcolepsy community have brought about a fuller life. We really appreciated Matthew’s honesty and empathy that he offers in sharing his experiences living with Narcolepsy.

You can follow Matthew at @mhorsnell on Instagram @matthorsnell. You can read his writings about Narcolepsy for Health Union here. You can watch his Rising Voices of Narcolepsy Story Sharing Event. You can also watch his presentation, “Social Support and Counseling: Navigating Narcolepsy And Mental Health Comorbidities” during Wake Up Narcolepsy REAL: Navigating Narcolepsy and Mental Health Education Day Webinar.

Grace McGinnis is a college student studying pre med, a Division 1 college athlete and also a person with Narcolepsy Type 1.

In this episode, Grace and Claire discuss how Grace functioned as a “sleepy child” and how she was aware at a young age that her experience of sleepiness wasn’t normal. In her sophomore year of high school, her health and performance as a swimmer were deteriorating. She sought insight from doctors. Around the 5th doctor, they suggested she get a sleep test. She was diagnosed with Narcolepsy Type 1. 

Now, Grace is in college and is also a competitive swimmer for the University of Miami! Grace candidly shares how she navigates her daily life of practice, school and friendship. She recommends structure, schedule and naps! She also offers insight into what it has been like to be so transparent about her Narcolepsy.

Grace’s honesty is so welcoming and it is no surprise as she has created a blog called Sleep G, to share her experience with sleep health and Narcolepsy.

You can follow Grace at @sleepyg_zzz and @Grace_McGinnis on Instagram. She recommends joining Narcolepsy groups on Facebook because as she says, “It’s a great way to connect with people and learn more.”

Dr. George Church is a Professor at Harvard & MIT, co-author of 580 papers, 143 patent publications & the book “Regenesis”; developed methods used for the first genome sequence (1994) & million-fold cost reductions since (via fluor-NGS & nanopores), plus barcoding, DNA assembly from chips, genome editing, writing & recoding; co-initiated BRAIN Initiative (2011) & Genome Projects, machine learning for protein engineering, tissue reprogramming, organoids, xeno-transplantation, in situ 3D DNA, RNA and protein imaging. 

He is also a person with Narcolepsy Type 1. 

In this episode, Dr. Church shares his diagnosis story which occurred alongside his daughter’s diagnosis of Narcolepsy. He offers insight on how he navigated his symptoms prior to diagnosis. He also shares how he currently manages his symptoms to live optimally at home and in his thriving lab. Claire was fortunate enough to have Dr. Church explain what his lab focuses on and if he has any future plans to conduct Narcolepsy research. 

You can follow Dr. George Church on Twitter @geochurch and learn more about his research and work here.

Ginna Freehling is a neuroscience graduate and works in cancer clinical research at a biotech company. She is also a PWN.

In this episode, Ginna shares how at the age of twenty she started experiencing symptoms of Narcolepsy. In the process of trying to figure out what was going on, she was discouraged by her sleep specialist to not seek a formal diagnosis. For the next few years, she managed her symptoms on her own. Finally, as symptoms worsen she was able to get a sleep test at Stanford and was diagnosed with Narcolepsy Type 1.

Ginna offers insight on medication titration, her experience with disclosing her diagnosis with work, navigating friendship and her passion for sleep education. She says, “As a society, we don’t put enough emphasis on the value of sleep.”

You can follow on Instagram @Ginna24. She says, “The XYREM/XYWAV Facebook group has been helpful to learn about others’ experiences in switching to XYWAV from XYREM.”

Ginna also offers, “In general I would say exercise and a diet low in simple carbohydrates can help with EDS. I follow a gluten-free diet due to a wheat allergy and IBS but have subsequently found that it helps my daytime wakefulness as well. Individuals with resources surrounding this include Belle Hutt @bellehutt on Instagram and Gina Dennis’ page madcapnarcolepsy.com.”

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

Dr. Jennifer Gudeman is the Vice President, Medical and Clinical Affairs at Avadel Pharmaceuticals. In this episode, Dr. Gudeman and Claire discuss how Avadel Pharmaceuticals is seeking FDA approval for a once-nightly form of sodium oxybate (FT218) for the treatment of EDS and cataplexy in people with Narcolepsy.

Dr. Jennifer Gudeman was appointed Vice President, Medical and Clinical Affairs at Avadel in December 2020. Avadel is a global biopharmaceutical company committed to improving the standard of care for people with Narcolepsy. Dr. Gudeman and her team are focused on publications of primary and secondary data from the phase 3 REST-ON trial of investigational once-nightly FT218 and building out the medical affairs programs. They are also leading an ongoing open-label extension clinical study, called Restore, to evaluate the long-term safety and tolerability of investigational once-nightly FT218.

Dr. Gudeman has published numerous peer-reviewed papers and provided domestic and international presentations on partnership with industry for drug development. In 2017, Dr. Gudeman received the Healthcare Businesswomen’s “Rising Star” award. During her career, she has led or contributed to six commercial product launches and three clinical development programs, as well as led interactions with medical societies and patient advocacy organizations to help ensure that commercial medications fulfill their clinically proven therapeutic benefits to patients and providers. Prior to joining Avadel, Dr. Gudeman was Vice President, Medical Affairs at AMAG Pharmaceuticals, overseeing a team of medical science liaisons and scientific communications. Dr. Gudeman graduated summa cum laude with a bachelor’s degree in pharmacy and magna cum laude with a doctorate in pharmacy from St. Louis College of Pharmacy in 1999 and 2000, respectively.

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

Travis Pavlicek is a husband, father of three and his son Cruz is a child with Narcolepsy.

In this episode, Travis shares how the onset of Cruz’s Narcolepsy symptoms escalated within a span of 3 weeks. He details how his family struggled to find a doctor who knew what was going on with Cruz until finally they drove through the night to Mayo Clinic in Rochester, Minnesota, and got a consultation from Dr. Kotagal.

Travis also shares how the diagnosis of Narcolepsy Type 1 affected the entire family. Claire and Travis reflect on the co-morbid and behavior issues that arise for children with Narcolepsy. Also how while establishing accommodations for CWN there is a lot of education involved to help administration and teachers understand Narcolepsy. 

Travis really advocates for parents with CWN to connect with other parents on Facebook groups, to read about children and adult experiences, and be honest with your immediate community. Finally, Travis shares how WUN’s Narcolepsy Family Camp had a profound effect on Cruz.

You can follow Travis on Instagram @travispavlicek and on Facebook @travis.pavlicek .

Here are some Facebook groups that Travis recommends: Narcolepsy Support Group, Wake Up Narcolepsy, Parents of Children with Narcolepsy, XYREM/XYWAV Support Group, Project Sleep, More Than Tired and Know Narcolepsy. 

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

Shamarla Morgan is a PWN and a Narcolepsy advocate.

In this episode, Shamarla shares how despite a self-diagnosis of Narcolepsy Type 1 within the first year of her symptoms, it took four years for her to receive a proper diagnosis. She experienced many frustrating interactions with doctors who didn’t take her communication about the disorder and her symptoms seriously. They chose to test her for other issues. 

What Shamarla experienced was medical racism and part of her Narcolepsy advocacy is to help raise awareness and educate doctors so that other Black Americans and people of color will be listened to when they communicate their symptoms.

Shamarla also shares her experience with not taking medication and the decision to take medication when she was in college. Shamarla is really intune with her body and her biggest lifestyle recommendation is to take naps. Sleep is medicine!

You can follow Shamarla on Instagram @sincerelyymorgan and on Facebook @shamarla.morgan.

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

Dr. John Peever is a professor of Cell and Systems Biology at the University of Toronto.

In this episode, Dr. Peever shares why he got into Narcolepsy and other sleep disorders research. He shares what his latest research is focusing on and how sleep research may influence future Narcolepsy treatments. 

In his efforts through research and the Canadian Sleep Society, he highlights how essential sleep is part of daily lives and our overall health.

You can learn more about Dr. John Peever’s research here. 

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

Ginger Zee is the chief meteorologist for ABC News, author, advocate and a person with Narcolepsy. 

In this episode, Ginger shares her journey to being diagnosed with Narcolepsy Type 2. She also shares how her mental health was affected by her drug prescriptions to her Narcolepsy symptoms. 

Claire and Ginger discuss how she handles her Narcolepsy while always having to be prepared to travel for work as a chief meteorologist for ABC News when a major weather event takes place. Ginger details her pregnancy experiences and being a mother of two. On top of her work as a meteorologist, Ginger is also an author. Ginger has written a memoir, Natural Disaster–I cover them, I am one, and a YA fiction series called Chasing Helicity.

Ginger is an advocate for both Narcolepsy awareness and encouraging young people to go into STEM.

You can follow Ginger at @ginger_zee on Instagram, @gingerzeetv on Facebook, and @ginger_zee on Twitter. You can check out her books on her website.

Belle Hutt is a fitness instructor, influencer, author, advocate and a PWN. 

In this episode, Belle shares her journey to being diagnosed with Narcolepsy Type 1. She also shares how she navigated her education while having Narcolepsy and not feeling comfortable to disclose to her professors about it. Ultimately, she decided to get personal trainer certification. 

Gradually Belle felt more confident sharing her reality of life with Narcolepsy. She began a blog and talked about it along with fitness on her Instagram. She found that exercise GAVE her energy. Belle was featured in a BBC documentary about her Narcolepsy and her online community blossomed. This year Belle published Energetic Narcoleptic, a book that shares her story, simple workout routines, easy nutritional meals and more all designed to help promote energy for people with Narcolepsy and those without. On top of all of that, Belle continues to be a fitness instructor at a gym in Amsterdam and online with her Belle Hutt Live Community.

We are grateful for Belle’s advocacy and partnership, as she has participated in leading at session at our Narcolepsy Summer Camp and interview on fitness for Doing Life During COVID-19 mini-series. 

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

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.

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.

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 Narcolepsy Type 1 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.

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 Narcolepsy 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.

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 Narcolepsy Type 1 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!”

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 (CWN). 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 was interviewed for WUN’s March blog post “Pediatric Narcolepsy – Expert Insight”

A Wake Up Narcolepsy backed research study was published in the Journal of Clinical Sleep Medicine in January 2021. Dr. David Ingram lead the study. To read up about their finding click here.

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.

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, and Wake Up Narcolepsy’s Family Camp for CWN.

Kelly Main is a person with Narcolepsy studying law and an 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.

Thaddeus Bath is a person with Narcolepsy and was a 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 was a part of the 2020 #TeamWUN for the Boston Marathon. Together, they trained and worked to raise $50,000 for Narcolepsy research. Although a marathon is hardly a big feat for him anymore, it was an honor for him to participate in the Boston Marathon through spreading Narcolepsy awareness and raising funds for Narcolepsy research. 

You can follow Thaddeus at @thaddeus_bath on Instagram and @thaddeusbath on Facebook.

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. In 2019, 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 had a great book come out in 2020, 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/.