Narcolepsy in The Mysterious Benedict Society New Disney+ Series
Julie Flygare | Wide Awake & Dreaming
by julie
3M ago
A review of Ep. 1-2 written by a person living with type 1 narcolepsy with cataplexy. Please note: may contain spoilers. Anyone else excited to watch Episode 3 of “The Mysterious Benedict Society” this weekend? Here’s my review of Episodes 1-2’s portrayal of narcolepsy! On June 25th, the first two episodes of “The Mysterious Benedict Society” premiered on Disney+ as a mystery adventure series based on the best-selling young adult book series by Trenton Lee Stewart. The books and TV series feature four gifted orphans who are recruited by an eccentric man living with type 1 narcolepsy with ..read more
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Live Book Events: Reading Narcolepsy Memoir
Julie Flygare | Wide Awake & Dreaming
by julie
3M ago
This Thursday! Join me for the FIRST-EVER online live reading of Wide Awake and Dreaming: A Memoir of Narcolepsy! I will go LIVE via my Instagram (@REMRunner) to read the first chapter of my book: Melting, this Thursday May 13th at 8pm ET. After I read the chapter, I’ll answer any questions you have live about that chapter & share a few fun behind-the-scenes insights and tips for writers and storytellers.  I plan to continue reading a chapter each Thursday at 8pm ET until we finish the book! Of course, no worries if you cannot join live, I’ll save these to my IGTV so you ca ..read more
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What’s the SOCIAL experience of living with narcolepsy?
Julie Flygare | Wide Awake & Dreaming
by julie
3M ago
Your social life experiences with narcolepsy matter! I’m excited to share a new survey that Project Sleep is conducting to better understand the social experiences and unmet needs of people living with narcolepsy and idiopathic hypersomnia. This survey is for individuals diagnosed with narcolepsy or idiopathic hypersomnia (18+ years old). It should take about 10-15 minutes, and your responses are anonymous. International respondents are welcome!  Take the survey by the deadline of Sunday, April 11, 2021. TAKE THE SURVEY Can supporters or family members of people with narcoleps ..read more
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Canadian Narcolepsy Research Opportunity
Julie Flygare | Wide Awake & Dreaming
by julie
3M ago
?? Canadian Friends!   There is a very cool research study underway in Montreal led by top international narcolepsy researchers, currently looking for people with narcolepsy type 1, narcolepsy type 2, and idiopathic hypersomnia (IH) to participate. Studying brain profiles of narcolepsy type 1, type 2 and IH Description: To better understand the brain of people with narcolepsy and idiopathic hypersomnia, Concordia University (Montreal – Canada), is looking for patients that are willing to participate in scientific research. The goal of this study is to learn more about the causes and bra ..read more
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Narcolepsy Treatments 2021 Update: Drug Development & Clinical Trials
Julie Flygare | Wide Awake & Dreaming
by julie
3M ago
Drug development in the narcolepsy space has gained incredible momentum the past few years. I shared progress updates in 2018 and 2019, and am excited to publish a new update today! There are new and upcoming narcolepsy treatment options in these categories: Wake-promoting or stimulant medications  Histamine-directed medications Nighttime medications  Hypocretin/orexin agonists  Wake-promoting or stimulant medications Solriamfetol/Sunosi Background: Solriamfetol (trade name Sunosi) is a wake-promoting agent, a dual-action dopamine and nonrepinephrine reuptake inhibitor to tre ..read more
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Am I a TYPICAL person with narcolepsy?
Julie Flygare | Wide Awake & Dreaming
by julie
3M ago
“Am I a TYPICAL person with narcolepsy?” No, I’m not. Here’s why: The majority of people living with narcolepsy are undiagnosed. Up to 75% of “us” are currently either undiagnosed or misdiagnosed with other conditions. So the most TYPICAL person with narcolepsy is walking around unaware of the true nature of their symptoms, questioning their strength, thinking they aren’t cut out for their education or career. “If only I got MORE sleep, was LESS stressed, exercised MORE, ate LESS, surely I wouldn’t be so tired…” Or maybe the TYPICAL person w/ narcolepsy has realized something is wrong & b ..read more
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Ready for Awareness? World Narcolepsy Day 2020 is one month away!
Julie Flygare | Wide Awake & Dreaming
by julie
3M ago
Less than one month until World Narcolepsy Day on Sept. 22, 2020, and I cannot wait for this second annual day dedicated to raising narcolepsy awareness on a global scale. World Narcolepsy Day 2020 is co-led by 26 non-profit patient advocacy organizations on six continents around the world. See all the orgs listed here. Last year,  you raised narcolepsy awareness from Finland to Australia, Kenya to Argentina, Canada to Japan, and many places in between! World Narcolepsy Day 2020 Of course, 2020 hasn’t been the year anyone expected, and in-person events are unlikely. However, in a year ma ..read more
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Special Online Event: Presenting My Narcolepsy Story & Book Reading
Julie Flygare | Wide Awake & Dreaming
by julie
3M ago
Join me for a very special FREE ONLINE EVENT! This Sunday, May 10th at 8:00 p.m. EDT, tune in to Project Sleep’s Facebook Page to hear my inspiring narcolepsy presentation and to read a few favorite passages from my memoir. Full details about the broadcast. I’ve presented this around the world in Italy, Ireland, Sweden, Australia and the United Kingdom, but never live online like this.  About the Talk: In this unique broadcast, I will share her journey—from wanting to push narcolepsy out of my life to finding self-acceptance, writing Wide Awake and Dreaming: A Memoir of Narcolepsy&n ..read more
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The Power of Community: Supporting One Young Man with Narcolepsy Lifts Us All
Julie Flygare | Wide Awake & Dreaming
by julie
3M ago
These are unprecedented times in the wake of COVID-19. I am sending virtual hugs, healthy vibes and restful nights to each of you. During a time when things feel pretty heavy, I wanted to share a heart-lifting story from my past week. Background: In late February/early March, Project Sleep (in conjunction with the Sleep Research Society) conducted a big “action alert” asking advocates to reach out to their Representatives across the US. The community rallied together incredibly, and as a result, a remarkable 41 Members of the U.S. House of Representatives signing onto an important letter ..read more
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Narcolepsy in The Mysterious Benedict Society New Disney+ Series
Julie Flygare | Wide Awake & Dreaming
by julie
1y ago
A review of Ep. 1-2 written by a person living with type 1 narcolepsy with cataplexy. Please note: may contain spoilers. Anyone else excited to watch Episode 3 of “The Mysterious Benedict Society” this weekend? Here’s my review of Episodes 1-2’s portrayal of narcolepsy! On June 25th, the first two episodes of “The Mysterious Benedict Society” premiered on Disney+ as a mystery adventure series based on the best-selling young adult book series by Trenton Lee Stewart. The books and TV series feature four gifted orphans who are recruited by an eccentric man living with type 1 narcolepsy with ..read more
Visit website

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