Narcolepsy Research
Lifting Weights and Each Others’ Spirits While Living with Narcolepsy and Cataplexy
One of the best parts of the Griffith Park Trial Marathon took place about 10 days BEFORE the race. Arriving home from work one night around 8:00 p.m., I was totally drained and wanted to call it a night, but I had to go running. Ugh. I’d run over 270 miles in four months, and only had…
Read MoreWeekend Plans? Sleep In to Raise Awareness!
After running Griffith Park Trail Marathon last weekend, I couldn’t be any more excited for Sleep In 2017 (#SleepIn2017) this weekend! Please join me by staying in bed for 12-48 hours to raise awareness about sleep health and sleep disorders. Yep, you heard me right… The challenge is to REST and SLEEP. Register here and invite your friends and family to…
Read MoreI did it!! Conquering Griffith Park Trail Marathon with Narcolepsy
On Saturday, March 4, 2017, I took on the Griffith Park Trail Marathon as a person with narcolepsy to raise funds for Project Sleep’s Jack & Julie Narcolepsy Scholarship. As I said here, I was nervous and uncertain. On the morning of the race, I woke up lethargic and stiff, but I showed up. I had…
Read More24 hours til my Mountain Marathon with Narcolepsy… No Clue How This Story Ends
Four months ago, I had the “crazy idea” of signing up for the Griffith Park Trail Marathon. When I signed up, I actually thought I had five months to prepare, when I only had four… What can I say, math isn’t my strong suit. Maybe I should’ve quit then, but if you know me, I’m pretty determined/stubborn.…
Read MoreHow to Become a Narcolepsy Advocate? Apply Today for Rising Voices of Narcolepsy – Deadline Approaching
We all have a story to tell. Let’s get busy telling yours! I’m so excited to share the news that Project Sleep is now accepting applications for the Rising Voices of Narcolepsy leadership training program. However, the application deadline is quickly approaching in 9 days on February 24th, 2017 at 5:00pm PST, so please view summer 2017…
Read MoreCourage is Contagious: Mental Health Provider Speaks Up About Narcolepsy
Meet Sarah, a mental health professional in Chicago who was diagnosed with narcolepsy in 2015 after facing years of mysterious symptoms and misdiagnoses. In this informative iBehaviorCoach Radio podcast hosted by Matt Lawson, Sarah debunks myths and raises important awareness about narcolepsy and the invisible nature of sleepiness. I eagerly tuned in to hear about Sarah’s experience…
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 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 More