Excessive Daytime Sleepiness

#SleepIn2020 Deadline TODAY for T-Shirts

by julie on February 18, 2020

Project Sleep’s SIXTH annual “Sleep In” will take place on March 13-15, 2020, but today, Feb. 18th is the deadline to order your official shirts. Please support our shirt fundraiser here.        Get shirts for the whole fam! Honestly, I get compliments and questions about my Sleep In t-shirts every time I wear one. […]

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Exciting News! Giving a TEDx Talk in San Diego

by julie on January 27, 2020

SO beyond excited to share this news: I’ll speak at TEDxSDSU on March 22, 2020 in San Diego, CA! Giving a TEDx talk has been a major life goal for about 7 years now, when i put it in my art journal as one of my major aspirations. And I’ve applied to many over the […]

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Last month, I gave one of my favorite presentations at the 10th Biennial Pediatric Sleep Medicine Conference hosted by my alma mater, Brown University. My “TED-style talk” had two key messages: Prescribing social support to people with narcolepsy, Partnering with patients, patient leaders and organizations to develop patient-centered research toward recognizing and addressing stigma. I’d spent […]

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Did you know the FDA has approved 27 novel drugs so far in 2019, and two of those are for narcolepsy?! How amazing is that?! The diversification of treatment approaches and new therapies under development and gaining FDA-approval for narcolepsy in the U.S. is SO EXCITING! In this post, I will provide an update on the narcolepsy […]

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Room 116: A Glimpse of the Future It was a basic, boring conference room, but there was nothing basic or boring about Room 116 at the Vancouver Convention Center on Wednesday, Sept. 25, 2019 at 4:30 p.m. As the final session of the final of five days of the World Sleep Congress including World Narcolepsy Day, […]

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Two people with narcolepsy. Double the insight! A few minutes into recording, I realized I’d never recorded a podcast with a fellow person with narcolepsy before. This interview with Leyla Sarper for the “Present Not Perfect” podcast was such a neat experience. I’m super excited to share this with you today! Listen now on Spotify here. […]

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Today, the new feature film, Ode to Joy opens in select theaters (in New York and Los Angeles) and releases via video on demand across the United States. Ode to Joy is a movie about a man, Charlie (played by Martin Freeman) navigating romance while living with narcolepsy with cataplexy. I was not involved in the development […]

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A few months ago, I had the pleasure of sitting down with Claire Crisp, Executive Director of Wake Up Narcolepsy (WUN), to record an interview for WUN’s Narcolepsy 360 podcast. This was a meaningful experience and a lot fun to share this conversation with Claire, who is an amazing leader, advocate and friend in the narcolepsy […]

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Seattle: I’m so excited to visit soon for three speaking engagements! 1.) Speaking Advocacy at the Hypersomnia Education Meeting I’m extremely honored that the Hypersomnia Foundation has invited me to speak about Project Sleep’s Advocacy at their upcoming Hypersomnia Education Meeting on Saturday, June 29, 2019, taking place from 10am – 3pm at the Seattle […]

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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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