51 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 Wake Up Narcolepsy

    • Health & Fitness
    • 5.0 • 1 Rating

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: Grace McGinnis

    Narcolepsy 360: Grace McGinnis

    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 swimmer were deteriorating. She sought insight from doctors. Around the 5th doctor, they suggested she get a sleep test. She was diagnosed with Type 1 Narcolepsy. 
    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.”
    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.

    Narcolepsy 360: Dr. George Church

    Narcolepsy 360: Dr. George Church

    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 Type 1 Narcolepsy. 
    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.
    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.

    • 26 min
    Narcolepsy 360: Ginna Freehling

    Narcolepsy 360: Ginna Freehling

    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 Type 1 narcolepsy.
    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.

    • 28 min
    Narcolepsy 360: Dr. Jennifer Gudeman

    Narcolepsy 360: Dr. Jennifer Gudeman

    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.
    To find out more information about Avadel’s Restore Study please go 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.

    • 25 min
    Narcolepsy 360: Travis Pavlicek

    Narcolepsy 360: Travis Pavlicek

    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, MN 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, Narcolepsy Network, 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.

    • 30 min
    Narcolepsy 360: Shamarla Morgan

    Narcolepsy 360: Shamarla Morgan

    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 in tune 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.

    • 26 min

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