narcolepsy resources
Speaking in Italy!
This September 23-24, I will travel to Italy to speak at a very special 20th anniversary party of A.I.N. (Associazione Italiana Narcolettici e Ipersonni) in Bologna. Other featured speakers will include Dr. Emmanuel Mignot from Stanford (USA) and Prof. Jean-Charles Schwartz from Paris (France). While there will be live translation, I’m hoping to brush up…
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 MoreReal-Life Narcolepsy Superhero Reveals Powers to Captain America’s Jeremy Renner
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…
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 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 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 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…
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