Raising Awareness
Upcoming Movie, Ode to Joy, Featuring Narcolepsy with Cataplexy Portrayal
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…
Read MoreOur Time to Shine! Behind-the-Scenes of Project Sleep’s Recent Advocacy Initiative
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…
Read MoreSleep Advocacy & Narcolepsy Awareness in Washington DC
“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…
Read More5 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 MoreOne Year Ago: Living the Fullest Expression of My Dreams
One year ago, I texted my best friend: “I’m going to quit my job now. Please don’t let me become homeless.” She reassured me I’d be okay. So, I stepped into my boss’ office with legs shaking, and jumped out into the most surreal section of my professional life. Feb 12th will officially mark one…
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 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…
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