Narcolepsy in The Mysterious Benedict Society New Disney+ Series

By julie | July 3, 2021 |

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”…

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Live Book Events: Reading Narcolepsy Memoir

By julie | May 10, 2021 |

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…

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What’s the SOCIAL experience of living with narcolepsy?

By julie | April 6, 2021 |

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…

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Narcolepsy Treatments 2021 Update: Drug Development & Clinical Trials

By julie | January 20, 2021 |

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…

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World Narcolepsy Day 2020 Activities Starting Soon!

By julie | September 6, 2020 |

World Narcolepsy Day 2020 is quickly approaching on Tuesday, September 22, 2020 and Project Sleep has an exciting schedule of activities planned for September. This is the second annual World Narcolepsy Day aiming to raise awareness of narcolepsy on a global scale. I’m a little excited, can you tell?  Project Sleep’s Schedule of Activities While international…

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Ready for Awareness? World Narcolepsy Day 2020 is one month away!

By julie | August 23, 2020 |

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…

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Living One-Third of My Life with Narcolepsy

By julie | September 19, 2019 |

Twelve years ago today, I was diagnosed with a classic case of type 1 narcolepsy with cataplexy, just four days after my 24th birthday. So as of today, four days after my 36th birthday, I’ve now spent one-third of my life officially as a “person with narcolepsy” (not counting the years of symptoms before diagnosis). For fun today,…

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Share! Narcolepsy with Cataplexy PSA Video with Ode to Joy Movie

By julie | August 19, 2019 |

Friends: I’m SO beyond thrilled to share the news with you today that Project Sleep proudly partnered with IFC Films and Ode to Joy Director, Jason Winer, to create a PSA to raise awareness about narcolepsy with cataplexy. Please watch and share with friends!   Teamwork makes the dream work I am so grateful to Jason…

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Join Us in Austin for the Central Texas Narcolepsy Forum

By julie | May 17, 2019 |

Friends, I’m thrilled to share the news that Project Sleep is co-hosting a unique one-day event in Austin, TX with the Austin Narcolepsy Support Group on Saturday, June 15, 2019 from 10:00 a.m. – 3:00 p.m. Please join us for the Central Texas Narcolepsy Forum – see the full details and register today!  Why am I…

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