Posts Tagged ‘Narcolepsy’
Canadian Narcolepsy Research Opportunity
?? Canadian Friends! There is a very cool research study underway in Montreal led by top international narcolepsy researchers, currently looking for people with narcolepsy type 1, narcolepsy type 2, and idiopathic hypersomnia (IH) to participate. Studying brain profiles of narcolepsy type 1, type 2 and IH Description: To better understand the brain of…
Read MoreAm I a TYPICAL person with narcolepsy?
“Am I a TYPICAL person with narcolepsy?” No, I’m not. Here’s why: The majority of people living with narcolepsy are undiagnosed. Up to 75% of “us” are currently either undiagnosed or misdiagnosed with other conditions. So the most TYPICAL person with narcolepsy is walking around unaware of the true nature of their symptoms, questioning their…
Read More“Soooo, you can just, like, fall asleep?!” Spoken Word Poetry on Narcolepsy
“Soooo, you can just, like, fall asleep?!” This video moved me to tears. Please watch and share Kara Sulzer’s powerful spoken word poetry on living with narcolepsy. Kara cuts right to the heart of so many key aspects of living with narcolepsy so quickly, discussing the symptoms, the social misperceptions and the BEST question she…
Read MoreJoin Us in Austin for the Central Texas Narcolepsy Forum
Friends, I’m thrilled to share the news that Project Sleep is co-hosting a unique one-day event in Austin, TX with the Austin Narcolepsy Support Group on Saturday, June 15, 2019 from 10:00 a.m. – 3:00 p.m. Please join us for the Central Texas Narcolepsy Forum – see the full details and register today! Why am I…
Read MoreSpeaking at Narcolepsy UK Conference 2019!
Honored to share the news that I’ll be a featured speaker at the Narcolepsy UK Annual Conference in Manchester on Sept. 7-8, 2019. I’m so excited to share my story at this event and meet people in the UK who already feel like old friends. Read Narcolepsy UK’s announcement and register today! I’ll never forget receiving the…
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 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 MoreToday: Please Ask Your Representative to Co-Sign Narcolepsy Research Letter
Hi friends! I’m so excited to share an amazing opportunity to support critical narcolepsy research THIS WEEK! My Representative, Congressman Schiff of California, is preparing to send a letter to NIH inquiring on the current size, scope, and direction of the narcolepsy portfolio (See Letters). This letter will encourage NIH to support the full spectrum of narcolepsy…
Read MoreJumping Into a New Chapter of My Journey
Hi friends! I’m so beyond excited to share that as of February 12, 2018, I made a huge career change and took on a new role as President & Chief Executive Officer (CEO) of Project Sleep! Read the full announcement here. Wait, what’s the difference? Some people have said they thought I was already serving in this…
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