Resources

One of my biggest takeaways from the APSS 2018 SLEEP Meeting last month was the great amount of drug development underway for narcolepsy! Below is a list of some of the emerging treatments “abuzz” at #SLEEP2018. These are at various stages in development, and it’s hard to predict how quickly each will advance to (hopefully) gain […]

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“There are two ways we can increase the public’s understanding of narcolepsy — we can push information out or we can pull them in with our stories.” -Rising Voices of Narcolepsy Workbook People ask me: “How do I get started sharing my story?” Project Sleep’s Rising Voices of Narcolepsy program is my answer, it is leadership […]

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Guest Contributors: Emily Barker, Ph.D. and Katherine Sharkey, M.D., Ph.D. New research published in the journal Sleep Medicine suggests that lactating women who take Xyrem (sodium oxybate) to treat narcolepsy with cataplexy can time their breastfeeding to avoid exposing nursing infants to elevated levels of the drug in milk (Barker et al., 2017). Data from […]

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Raising Narcolepsy Awareness in Italy!

by julie on November 13, 2016

On Saturday Sept. 24, 2016, I stood outside the fancy lecture hall at the University of Bologna in Italy, fidgeting with nerves. I picked up my headset for the “live translation” system that would be my lifeline for the day. Traveling to Italy to speak at the 20th Anniversary of AIN (Associazione Italiana Narcolettici e […]

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I’m so honored to be a keynote speaker at Health:Further Summit in Nashville, TN on August 23-24, where I’ll join the stage with industry leaders to talk innovation and advanced solutions for the biggest issues facing healthcare. For this audience of healthcare executives and innovators, I’ll debut a new speech called, In Sickness or Health? Breaking Down Barriers […]

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This month, Project Sleep announced Rising Voices of Narcolepsy ℠, a leadership training program to help people with narcolepsy effectively share their stories through public speaking and writing with local communities, healthcare providers, news outlets, blogs and beyond. On a personal note, this is a huge dream come true for me. It’s such a joy to use my seven years of experience […]

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Check out this amazing depiction of terrifying symptom of ‪#‎narcolepsy‬ called CATAPLEXY – created by Eleanor of Falling Asleep: A Narcolepsy Guidebook. Please note: this character is fully conscious and awake yet crumbling to the ground paralyzed. It’s terrifying.   For more infographics, blogs and resources: www.falling-asleep.com Commentary by Julie Flygare: I was 22 when my knees fight buckled while […]

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I’m thrilled to share my 5-minute Ignite! Talk from Stanford Medicine X 2015. Please share with friends and family to raise narcolepsy awareness (https://youtu.be/MXTd8xd_f8s). In this video, I describe my journey with narcolepsy from people laughing in my face to living proudly and creating the NARCOLEPSY: NOT ALONE campaign. I emphasize how feeling “misunderstood and alone” with […]

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After my boss and leadership got even more involved – the nap room situation improved quickly. (Read Part I and Part II of this story.) Nap Bench on the Move: The nap bench was moved again, this time to a small room on the second floor along a nice secluded quiet hallway. The door’s sign was changed to Wellness Room. […]

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Grand Rounds is the important educational tradition of doctors and healthcare professionals getting together to learn about evolving areas which may be outside of their core practice. However, patients are rarely invited to participate, so sharing my narcolepsy journey at Nova Southeastern University (NSU)’s Grand Rounds on May 8, 2015 was a HUGE honor. This is why, just 24 hours […]

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