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’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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“We are witnessing a revolution of our understanding of narcolepsy.” – Dr. Emmanuel Mignot, M.D. Ph.D., Director of the Center for Sleep Sciences and Medicine, Stanford University 2018 was an exciting year for narcolepsy research and drug development. Here’s my top six research highlights of 2018 that you should know about! 1. Narcolepsy & 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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Life Science Leader magazine recently published one of my most honest opinion pieces, “Words Matter: At The Crossroads Of Innovation And Dignity.” In this article, I highlight a tension between patient-centered language (that prioritizes neutral language to respect variation and individual autonomy) versus drug development language (that may lean toward hyperbole or negativity to help establish urgent unmet needs). […]
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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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Hello Audiobook! Today, I’m SO beyond thrilled to release the AUDIOBOOK for Wide Awake and Dreaming: A Memoir of Narcolepsy! Available now on Audible, Amazon and iTunes. Listen to a sample and download here (your first audiobook with Audible is always FREE!). Watch Preview Narrating is an Art Recording the audiobook is something I’ve been […]
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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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Join Us In Sydney! I’m so excited to head to Sydney, Australia for the “Insight” Peer Event on October 13, 2018 hosted by Narcolepsy Australia! Only a few spots left, so register today: https://register.narcolepsyaustralia.org.au/. I’m preparing a new presentation for this speaking engagement – with exciting updates since I last visited to keynote the Narcolepsy Australia conference […]
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This past week, I was honored to represent Project Sleep at the 7th International Symposium on Narcolepsy from Sept 9 – 13, 2018 in Beverly, MA. At this meeting, leading narcolepsy researchers and clinicians from around the world came together to discuss developments in the clinical features of narcolepsy, promising treatment advances, and the underlying neurobiology […]
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