Narcolepsy 360

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.

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.

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.

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 about 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.

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.

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 a 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.

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.

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.

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.

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 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 intune 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.

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. 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 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 on Twitter.

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.