Narcolepsy Awareness
5 Things You Might Not Know About Me – Drinking & Driving with Narcolepsy
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…
Read MoreThe Stories We Share Today Become the World We Live In Tomorrow
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…
Read More2018: A Groundbreaking Year for Narcolepsy Research & Drug Development
“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…
Read More2018: My Year in Review
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…
Read MoreRepresenting Narcolepsy in Suffering the Silence Video & Photo Shoot
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…
Read MoreWords Matter: At The Crossroads Of Innovation And Dignity
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). …
Read MoreWATCH NOW: “Translating the Patient Story into Action”
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…
Read MoreSpeaking in Bronxville, New York this Wednesday
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…
Read MoreReleasing the Audiobook of Wide Awake and Dreaming: A Memoir of Narcolepsy
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…
Read MoreSo This is 35…
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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