Narcolepsy Patient

Taking a “Sick Day” with Narcolepsy

by julie on September 28, 2019

When working in traditional offices, I struggled with “sick days.” I didn’t often get colds or flus. I just dealt with my narcolepsy with cataplexy, which was fairly stable and “well-managed” by the time I took these jobs. Yet narcolepsy was still with me every day, to varying degrees — from minor annoyance to extreme […]

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Living One-Third of My Life with Narcolepsy

by julie on September 19, 2019

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, […]

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Two people with narcolepsy. Double the insight! A few minutes into recording, I realized I’d never recorded a podcast with a fellow person with narcolepsy before. This interview with Leyla Sarper for the “Present Not Perfect” podcast was such a neat experience. I’m super excited to share this with you today! Listen now on Spotify here. […]

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Friends: I’m SO beyond thrilled to share the news with you today that Project Sleep proudly partnered with IFC Films and Ode to Joy Director, Jason Winer, to create a PSA to raise awareness about narcolepsy with cataplexy. Please watch and share with friends! Teamwork makes the dream work I am so grateful to Jason and […]

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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 […]

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LET’S PARTY LIKE IT’S 1999: Twenty years ago today, a dog named Kahlua was on the cover of the journal Cell. Kahlua was a doberman pinscher with canine narcolepsy and an important piece of history. Today marks 20 years since Dr. Emmanuel Mignot, MD, PhD, and his team at Stanford University published their key paper […]

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Listen Now: CALM + COZY podcast interview

by julie on July 31, 2019

Apparently I felt comfortable and a bit snarky on the day that I recorded this CALM + COZY podcast interview with the amazing host, Beth Wyatt (@sleepcoachbeth on IG), because I’m pretty honest and animated here! Beth asked great questions that led to unique conversations not part of my usual “talking points” repertoire. My favorite discussion […]

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A few months ago, I had the pleasure of sitting down with Claire Crisp, Executive Director of Wake Up Narcolepsy (WUN), to record an interview for WUN’s Narcolepsy 360 podcast. This was a meaningful experience and a lot fun to share this conversation with Claire, who is an amazing leader, advocate and friend in the narcolepsy […]

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Seattle: I’m so excited to visit soon for three speaking engagements! 1.) Speaking Advocacy at the Hypersomnia Education Meeting I’m extremely honored that the Hypersomnia Foundation has invited me to speak about Project Sleep’s Advocacy at their upcoming Hypersomnia Education Meeting on Saturday, June 29, 2019, taking place from 10am – 3pm at the Seattle […]

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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 […]

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