Advocacy

Recently, ‘Captain America: Civil War’ star Jeremy Renner said that he wanted to be “Captain Narcolepsy… so he could nap whenever he wanted” on Live! with Kelly and Michael. Afterward, many people with narcolepsy and their supporters took to social media to respond. One particular response caught my attention – written by Wendy Ellsworth, a 34-year-old registered nurse living […]

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Recently, ‘Captain America: Civil War’ star, Jeremy Renner appeared on Live! with Kelly & Michael, stating, “I want to be Captain… Narcolepsy… I just want to nap whenever I want to nap.” Kelly adds, “My husband already beat you to it. We call it mark-olepsy.” [Everyone laughs…] Watch here (comment is at 6:45): My opinion: In reaction, I […]

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In this Everyone Included™ video, I speak with MedX innovators about what is means to track or measure our health. Are all things measurable? How do we make sure that intangible and invisible things like puppies, pain, happiness, sleepiness and social support, are part of the story too? How do we shift the culture of healthcare from “I […]

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Recently, I was honored to join a group of rockstar advocates and innovators for a fantastic discussion and experimental filming exercise! Check out this awesome first video highlighting narcolepsy, sleepiness and invisible illnesses: When you get invited to an “experimental filming dinner party” in the Hollywood Hills where there’s no cellphone service, you may feel a little uncertain… […]

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A few nights ago, I returned home from work exhausted and found a mysterious heavy package on my doorstep. Inside was a brand new copy of Narcolepsy: A Clinical Guide (2nd ed.), edited by Dr. Meeta Goswami, Dr. Michael Thorpy and S.R. Pandi-Perumal. As a patient advocate, it was a HUGE honor to contribute the chapter […]

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Happy Rare Disease Day 2016!

by julie on February 29, 2016

Today, February 29 is Rare Disease Day! With 350 million people around the world living with a rare disease, HUG someone with a RARE DISEASE today. For Rare Disease Day 2016, I was SO honored to contribute to two great articles for Mashable’s Social Good program. Author, Katie Dupere eloquently describes: “For those living with rare […]

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On March 11-13, Project Sleep is taking to our beds for SLEEP IN 2016 to make PEACE with SLEEP during National Sleep Awareness Week! Challenge yourself to stay in bed for 12-48 hours over the weekend and join an international movement to raise awareness about sleep health and sleep disorders. Register today (it’s free): www.crowdrise.com/sleepin2016 With […]

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Check out this fun podcast! I was so honored to be featured on “Just Talking Podcast” with Christopher Snider. I met Chris at MedX, he is the creator of mydiabetessecret.com and an incredible role model and ePatient leader who is shining a bright light on the power of the patient voice. It’s funny when someone you look […]

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Scariest Moment of 2015: I gave 12 presentations in 2015, but by far the most intimidating was my 5-minute ignite talk at Stanford Medicine X. My legs trembled stepping on stage in front of this prestigious group of healthcare innovators. I’d prepared for months, but still totally blanked mid-speech, making for a dramatic pause…….. But I did it and I’m […]

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REM Runner’s Note: On Sept. 24, 2015, I had the huge honor of stepping on the MedX main stage at Stanford Medical School to give an ePatient Ignite Talk. This is (more-or-less) what I said:  ************ Diagnosed with narcolepsy at age 24, I was excited to tell my friends and family. Finally! I had legitimate medical terms […]

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