Julie Flygare is a leading narcolepsy spokesperson, published author, blogger, yogi and runner diagnosed with narcolepsy and cataplexy in 2007. She received her Bachelor of Arts Degree from Brown University in 2005 and her Juris Doctor from Boston College Law School in 2009.
Upon recognizing that many doctors were unfamiliar with narcolepsy, Julie collaborated with Harvard Medical School researchers in 2009 to establish a 5-hour educational program based on her story now taught to all Harvard Medical School students.
She is the author of “REM Runner” blog about running and living with narcolepsy. On April 19, 2010, Julie took on one of the greatest athletic challenges of her life, running the Boston Marathon. On June 16, 2012, she ran the steepest major road race in the U.S.A., the Mount Washington Road Race.
Julie has spoken about narcolepsy to scientific researchers, doctors, nurses, Harvard Medical students, NIH, FDA and CDC government officials and the general public. Her story has been featured by Marie Claire Magazine, ABC News, NBC Universal, Sirius XM Radio and the Discovery Channel. (View Press)
In 2011, Julie established the first SLEEP WALK in Washington DC and received the National Public Awareness Award from Narcolepsy Network. In December 2012, she published “Wide Awake and Dreaming: A Memoir of Narcolepsy,” which won First Place in the 2013 San Francisco Book Festival Award for Biography/Autobiography.
In 2012 – 2013, Julie led efforts to successfully secure narcolepsy’s place in FDA’s Patient Focused Drug Development Initiative.
Julie currently lives in Los Angeles, CA and serves on NIH’s Sleep Disorder Research Advisory Board. Most recently, she created the NARCOLEPSY: NOT ALONE international awareness campaign to prove that narcolepsy is REAL and that we are NOT ALONE.
Narcolepsy is a neurological autoimmune sleep disorder in which the brain loses the ability to maintain normal sleep and wake states. Affects 1 in every 2,000 Americans (200,000-250,000 Americans). For more info: NARCOLEPSY INFOGRAPHIC & NARCOLEPSY QUICK FACTS.
Dr. Oliver Sacks and Jonah Lehrer
“You have been told that, even like a chain,
you are as weak as your weakest link.
This is but half the truth. You are also
as strong as your strongest link.” -Kahlil Gibran
Julie’s Greatest Dream:
For children with narcolepsy to stand tall and proud, knowing they’re overcoming adversity and going to succeed in life.
– Julie Fain, MTV True Life
-Marcia (Founder, Dormez-Vous Studios)
Book Julie for your next event! Her story offers something for everyone.
Past Speaking Engagements:
- Harvard Medical School
- APSS SLEEP Meeting 2013
- Social Media for Pharma Conference
- Narcolepsy Network
- Southern Sleep Society
- Children’s National Medical Center – Narcolepsy in the Classroom Event
- Seminars in Brain and Behavior (Boston area neurologists and neuroscientists)
Upcoming Speaking Events:
- BRPT Symposium
- Book Signing Event, September 13, 2013
- Legal Considerations of Daytime Sleepiness, September 14, 2013
- Narcolepsy Network Conference
- Book Discussion Session, October 19-20, 2013
- Florida International University
- Diversity Day Keynote Speaker, October 22, 2013
Speaking topics include:
- “When Dreams Leave the Night” – My Personal Journey with Narcolepsy (30-45 minutes)
- “What Patients Want” – Patients’ Perspective on Social Media & Online Engagement (30-45 minutes)
- “Legal Considerations of Daytime Sleepiness” – Overview of Educational, Employment and Driving Laws (30-45 minutes)