Am 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
World Narcolepsy Day 2020 Activities Starting Soon!
World Narcolepsy Day 2020 is quickly approaching on Tuesday, September 22, 2020 and Project Sleep has an exciting schedule of activities planned for September. This is the second annual World Narcolepsy Day aiming to raise awareness of narcolepsy on a global scale. I’m a little excited, can you tell? Project Sleep’s Schedule of Activities While international…Read More
Exciting News! Giving a TEDx Talk in San Diego
SO beyond excited to share this news: I’ll speak at TEDxSDSU on March 22, 2020 in San Diego, CA! Giving a TEDx talk has been a major life goal for about 7 years now, when i put it in my art journal as one of my major aspirations. And I’ve applied to many over the…Read More
Living One-Third of My Life with Narcolepsy
Twelve years ago today, I was diagnosed with a classic case of type 1 narcolepsy with cataplexy, just four days after my 24th birthday. So as of today, four days after my 36th birthday, I’ve now spent one-third of my life officially as a “person with narcolepsy” (not counting the years of symptoms before diagnosis). For fun today,…Read More
Are Sleep and Happiness Related? Listen Now To Find Out!
I was honored to be a guest on the More Happy Life Podcast with Andy Proctor recently. We talked sleep, spoons, narcolepsy, storytelling, happiness, dreams and more. Listen here. Episode description: In this episode we talk about all things sleep and much more! How does sleep impact our energy, mood, and clarity? How much sleep do…Read More
“Ode to Joy” Movie Review From A Person Living with Narcolepsy with Cataplexy
Today, the new feature film, Ode to Joy opens in select theaters (in New York and Los Angeles) and releases via video on demand across the United States. Ode to Joy is a movie about a man, Charlie (played by Martin Freeman) navigating romance while living with narcolepsy with cataplexy. I was not involved in the development…Read More
WATCH NOW: Project Sleep’s FB Live Narcolepsy Video with Dr. Emmanuel Mignot and Watson
Last week, I was thrilled to spend the afternoon with Dr. Emmanuel Mignot and Watson (Dr. Mignot’s chihuahua living with narcolepsy with cataplexy). Together, we recorded Project Sleep’s first Facebook Live video at Stanford Medical School. In this “Ask Us Anything” FB Live video, we fielded a wide variety of questions from the future of…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…Read More
2018 Exciting Update: Advancing Novel Treatment Options for Narcolepsy
One of my biggest takeaways from the APSS 2018 SLEEP Meeting last month was the great amount of drug development underway for narcolepsy! Below is a list of some of the emerging treatments “abuzz” at #SLEEP2018. These are at various stages in development, and it’s hard to predict how quickly each will advance to (hopefully) gain…Read More
Upcoming Narcolepsy Speaking Engagements: New York, Colorado and via Webcast!
I’m thrilled to share some upcoming opportunities to hear me speak this April! Saturday, April 7th at 2:00 p.m. EDT: Webcast with Avadel Pharmaceuticals I’ll give a new 15-minute presentation on “Living Well with Narcolepsy.” Other experts will share about FT 218, once-nightly sodium oxybate, and the ongoing REST-ON Phase III clinical study. Clinical trials are…Read More