Narcolepsy Book
A proud moment – publishing a chapter in narcolepsy clinical guide
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…
Read MoreHappy Rare Disease Day 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…
Read MoreSleep in to speak out! Join Project Sleep’s SLEEP IN 2016 today.
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…
Read MoreNap Shame. I’ve got it. Do you?
In this short audio clip, I explore my feelings of shame and embarrassment around taking a nap at work. (Also available here) Do you have nap shame or are you an empowered napper? I want to hear your thoughts!
Read MorePodcast: A conversation about narcolepsy, Homer Simpson, memoir writing and marathon running.
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…
Read More2015 Reflections & Dreams for 2016 – Homer Simpson, Koalas and Marathons, Oh My!
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…
Read More99 cents SALE – E-book of Wide Awake and Dreaming: A Memoir of Narcolepsy – LIMITED TIME
For one week, download Kindle version of Wide Awake and Dreaming: A Memoir of Narcolepsy for just $0.99. To inspire more readers this holiday season, I’ve discounted my e-book from $8.99 to $0.99. Please share or gift this to friends and family members. Together, we are building a brighter future for narcolepsy, and I’m so grateful for your support! Purchase…
Read MoreCelebrating 3 years of Wide Awake and Dreaming: A Memoir of Narcolepsy – An Honest Reflection
Writing for me is time-traveling. On January 16, 2012, I sipped a steaming hot soy latte at my favorite coffee shop in Arlington, Virginia, cued up the classical piano in my headphones and closed my eyes. Here we go! On this day, my time-traveling destination was a hotel room in Albany, New York – four years earlier. The subject…
Read MoreWATCH NOW: MedX 2015 Ignite! Talk by Narcolepsy Advocate, Julie Flygare
I’m thrilled to share my 5-minute Ignite! Talk from Stanford Medicine X 2015. Please share with friends and family to raise narcolepsy awareness (https://youtu.be/MXTd8xd_f8s). In this video, I describe my journey with narcolepsy from people laughing in my face to living proudly and creating the NARCOLEPSY: NOT ALONE campaign. I emphasize how feeling “misunderstood and alone” with…
Read MoreWhat I Said: Julie Flygare’s MedX Ignite Talk Transcript
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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