Narcolepsy
Follow My Marathon Training as a Person with Narcolepsy
Two weeks ago, I set out for my longest steepest training run yet to prepare for Griffith Park Trail Marathon on March 4th. I documented my 17.4 mile marathon training experience via Instagram Story and it was so fun, I had to share here: I hope you enjoyed coming along my training run with me!…
Read MoreWoman with Narcolepsy Versus Colossal Marathon
When I hit “publish” on this post, I will be sharing something I’ve been scared to tell you. So here it goes… On March 4th, I will take on the greatest athletic challenge of my life – the Griffith Park Trail Marathon. Will you support me? This beastly race is 26.2 miles while also climbing 3,669 feet…
Read More2016: A Year in Narcolepsy Advocacy with Julie Flygare
From the White House to Italy and Ireland – 2016 was an AMAZING year of narcolepsy advocacy and Project Sleep programming! This video shares this whirlwind of a year. It was a joy and honor to give 12 presentations to doctors, researchers, med students, patients and families across the country and around the world this…
Read MoreTeaching Class at Stanford Medical School
Recently, I got to teach the Engage & Empower Me class at Stanford Medical School. I shared my story of narcolepsy and founding Project Sleep to make sleep cool, then the students conducted a design-thinking challenge on promoting healthy sleep habits for college students. The students came up with AWESOME project concepts. Also they taught…
Read MoreRe-Discovering Halloween with Narcolepsy
Nine Halloweens ago, I felt like a “monster” – lacking the energy and health to play the role of the fun fabulous party host I wanted to be. At the time, I was a few weeks into my narcolepsy diagnosis and struggling terribly to adjust. Check out chapter 11 of my memoir, Wide Awake and Dreaming:…
Read More“I’ll Never Forget Narcolepsy Now.” -UCLA Medical Student
This fall, I was BUSY spreading narcolepsy awareness to doctors, medical students and researchers across the country. Upon returning from Italy, I started back at my full-time job in pancreatic cancer advocacy first thing the next morning. The following evening, I traveled to UCLA Medical School to give my narcolepsy presentation for first-year medical students…
Read MoreA Message to the Narcolepsy Community in Italy!
REMRunner’s Note: This post is in Italian for the amazing friends I met during my recent trip to Bologna. To read about my trip in English, check out part I and part II. Ciao amici, Grazie per avermi accolto nel vostro paese. E’ stato così meraviglioso incontrarvi e passare la giornata con voi al 20° anniversario dell’AIN (Associazione…
Read MoreRaising Narcolepsy Awareness in Italy!
On Saturday Sept. 24, 2016, I stood outside the fancy lecture hall at the University of Bologna in Italy, fidgeting with nerves. I picked up my headset for the “live translation” system that would be my lifeline for the day. Traveling to Italy to speak at the 20th Anniversary of AIN (Associazione Italiana Narcolettici e…
Read MoreWhen Your Body Says “OH HELL NO” in Italy – Practicing Radical Self Care On The Fly
I felt a scratch in my throat at Stanford’s Medicine X conference. Flying to Italy, pressure spread across my forehead. Waking early the next morning in Bologna, a breeze swirled in through my open hotel window. I smiled and then I coughed… And coughed… And coughed. It was official. I was sick. In Italy. How could…
Read MoreThe Magic of MedX 2016
On my birthday, I traveled to San Francisco to participate in my favorite conference, Stanford Medicine X 2016! On Thursday, Sept 15, I participated in two interesting workshops and then the full conference took place Friday Sept 16 – Sunday Sept 18. Although this was only my second year attending MedX, it felt like a…
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