Narcolepsy Nonprofit

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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Friends in the U.S., if you care about narcolepsy research (or any other area of sleep and sleep disorders research), you can play an important role in ensuring that this research is supported by our federal government. While private fundraising for research is wonderful and important too, private fundraising cannot replace the need for federal […]

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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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Hollywood’s portrayals of narcolepsy are notoriously inaccurate. For one day, the script was different, thanks to Suffering the Silence, AwesomenessTV and Visible. I was so proud to represent narcolepsy in this cool new video! Watch Video: Hello Hollywood! The morning of the Suffering the Silence filming and photo shoot, I arrived at the fancy AwesomenessTV studio in […]

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Interested in raising awareness but not sure how to start? This awesome webinar, “Translating the Patient Story into Action” is the perfect place to start! Hosted by the Society for Participatory Medicine, this webinar features a few different perspectives on raising your voice in the healthcare space. I was honored to be included and really […]

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I’m home from Australia today, but heading off to New York tomorrow, because I couldn’t pass up this amazing opportunity to be a keynote speaker during Sarah Lawrence’s Sleep Week. New York friends: Please join me this Wednesday 10/17 from 6-8 pm ET at Sarah Lawrence College in Bronxville, NY! I’ll share my inspiring personal […]

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So This is 35…

by julie on September 30, 2018

September was a whirlwind and somewhere in there, I turned 35. So now it’s been 11 years since I was diagnosed with type 1 narcolepsy with cataplexy and five years since I moved to Los Angeles and founded Project Sleep. Where the heck did the first half of my 30s go? A few flashbacks come […]

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