News/Media
2018: 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 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 MoreJoin Me in Sydney! Narcolepsy Australia Event
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…
Read MoreReporting Back from the International Symposium on Narcolepsy
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…
Read MoreNarcolepsy Meets Design Thinking – Join Me for Unique Boston Event
Please join Project Sleep in Boston for “Innovations in Narcolepsy Awareness” on Saturday, Sept. 15, from 10 a.m. – 4 p.m. at the NonProfit Center (89 South Street, Boston, MA – one block from South Station). This one-day meeting and interactive workshop will empower and educate advocates while also advancing novel approaches to educating the public…
Read More“Ask Us Anything!” with Dr. Mignot, Julie Flygare and Watson
Friends! I’m super excited to share that on Tuesday, Sept. 4, at 7 p.m. ET, Project Sleep will host a very special “Ask Us Anything” Facebook Live event, featuring myself along with Emmanuel Mignot, M.D. Ph.D., Director of the Stanford Center for Sleep Sciences and Medicine, and Watson, a chihuahua with narcolepsy. We will answer as many of your…
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