Narcolepsy Patient

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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Speaking at Narcolepsy UK Conference 2019!

by julie on April 25, 2019

Honored to share the news that I’ll be a featured speaker at the Narcolepsy UK Annual Conference in Manchester on Sept. 7-8, 2019. I’m so excited to share my story at this event and meet people in the UK who already feel like old friends. Read Narcolepsy UK’s announcement and register today! I’ll never forget receiving the […]

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Today, Project Sleep issued the following public statement after receiving many questions from community members about the upcoming feature-length movie, Ode to Joy. Project Sleep’s Public Statement: Narcolepsy Portrayal in Film, Ode to Joy Los Angeles, CA, April 10, 2019 — Project Sleep would like to inform our supporters and the narcolepsy community that we are aware […]

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I was scared. I didn’t know if you’d come with me on this path. We’d JUST finished the incredible record-breaking Sleep In 2019 campaign, with many of you giving time and spoons to support Project Sleep. The very next day, I learned that our advocacy moment had arrived — yay!! But with a really quick turnaround […]

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“One day you finally knew what you had to do, and began…” — Mary Oliver, The Journey Ten years ago, I ended my silence. I started writing a memoir about narcolepsy and moved to DC to begin advocating. The last decade has been a whirlwind, the lowest of lows and highest of highs, and all […]

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Warning: you may NOT like this post, but here goes a 5 Things You Might Not Know About Me – including drinking & driving with narcolepsy (but not at the same time): 1. My car is named Delicious. There’s a minor character named Delicious in my fav Curb Your Enthusiasm episode and around that time […]

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I’m thrilled to share Project Sleep’s new narcolepsy awareness video series. These videos feature five of our Rising Voices of Narcolepsy speakers sharing their personal stories, interwoven with key narcolepsy facts. I hope you will be as moved as I am by these brave stories and share them today: WATCH NOW SHARE ON FACEBOOK TWEET IT   Why […]

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2018: My Year in Review

by julie on December 29, 2018

2018 was a year unlike any other. I invested in a few new suitcases, which helped me get around easier since I don’t think I’ve ever traveled so much in one year. Here are some highlights, challenges, favorite reads, lessons learned and dreams for the new year! Highlights of 2018: Taking the leap to become the […]

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