Narcolepsy 360

Thomas Gow is a Client Experience Analyst at TruDataRx. Thomas is also a person with Type 1 Narcolepsy 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 ...

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 Type 1 Narcolepsy.

In this episode, Tove reflects that she bel...

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

In this episode, Claire and Desireé 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 migr...

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

Nicole Kenyon is a person with Type 1 Narcolepsy. 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 sl...

Matthew Horsnell is a person with Type 1 Narcolepsy. 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 ...

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

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...

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...

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 sym...

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...

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, ...

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 ser...

 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 narc...

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 about how her mental health was affected by her drug prescriptions to her narcolepsy symptoms. 

Claire and Ginger discuss h...

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....

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. 

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 narcoleps...

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 expe...

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 C...