Narcolepsy Research
A Monumental Day: Visiting the White House as a Narcolepsy Advocate
On June 2, 2016, I had the honor of attending the White House/Stanford Medicine X workshop, “Engaging Participants as Partners in Research”, as part of President Obama’s Precision Medicine Initiative. This event far exceeded my wildest expectations. But first, some context. It’s Gonna Be a Good Day: The day before going to the White House, on…
Read MoreRepresenting Narcolepsy at the White House
This week, I received a very special invitation from the WHITE HOUSE! I am so honored to share that on June 2, 2016, I will join the Medicine X and EveryoneIncluded™ family of rockstar advocates and innovators at the White House for an important discussion on patients as equal partners in research, a core goal of President Obama’s…
Read MoreWatch Now: Today’s Tiny Triumph – A Video by Everyone Included & MedX
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…
Read MoreMy best hallucination yet! A Visit from the Phantom Foot Massager
During lunchtime today, I went to my nap room at work, cuddled up into my lovely blanket from Ireland and quickly fell asleep. Next thing, I awoke to the most AMAZING foot massage!! Oh la la. My feet were sore from intense yoga classes over the weekend, so I really appreciated the free yummy foot massage from…. um…. my phantom foot…
Read MoreWhat does cataplexy look like? GIF by Eleanor of www.Falling-Asleep.com
Check out this amazing depiction of terrifying symptom of #narcolepsy called CATAPLEXY – created by Eleanor of Falling Asleep: A Narcolepsy Guidebook. Please note: this character is fully conscious and awake yet crumbling to the ground paralyzed. It’s terrifying. For more infographics, blogs and resources: www.falling-asleep.com Commentary by Julie Flygare: I was 22 when my knees fight buckled while…
Read MoreEver Met Someone with Narcolepsy? Or Feeling ALONE with Narcolepsy?
I recently created my first Flipagram, highlighting the NARCOLEPSY: NOT ALONE campaign! I hope you enjoy and please share with friends and family. Watch here: Thanks for watching my first Flipagram! NARCOLEPSY: NOT ALONE has over 1,200 photos of people with narcolepsy and supporters from all 50 U.S. States and 48 countries around the world. Of course, this campaign is not…
Read MoreNARCOLEPSY: NOT ALONE takes over the French Alps!
Say HELLO to Ben who shares a monumental message of hope and narcolepsy awareness from 5,800 feet in the air. Thanks to Ben, NARCOLEPSY: NOT ALONE is now inscribed on a scenic snow-topped mountaintop in the French Alps, along a popular chair-lift route for every single ski resort visitor to see until the next snow…
Read MoreVisiting Ireland to Speak at Ireland’s Narcolepsy Awareness Day 2016
This National Sleep Awareness Week, I had the honor of traveling to Ireland to be the keynote speaker at Ireland’s 4th Annual Suddenly Sleepy Saturday Narcolepsy Event on March 12, 2016. This experience, and my entire trip to Ireland, was totally unforgettable and surreal. After the long journey from Los Angeles to Ireland, I arrive in…
Read MoreA 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 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…
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