For five years, the REM Runner blog has offered hope, inspiration and awareness tools for the narcolepsy community. People with narcolepsy often feel lost and alone, until they find this unique and positively-spirited website. As an active runner, yogi and outspoken advocate, I try to highlight the highs and lows of living and running with narcolepsy – from collapsing to the ground to speaking across the country.
Julie’s Greatest Dream:
For children with narcolepsy to stand tall and proud, knowing they’re overcoming adversity and going to succeed in life.
“Chase your dreams, or they’ll chase you.”
“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
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 Resources.
About Julie Flygare:
Julie Flygare, JD is the founder of Project Sleep, a narcolepsy spokesperson and published author diagnosed with “narcolepsy with cataplexy” in 2007, in her second year of law school. Inspired by her patient experience, she focused her legal education on health law and rare disease drug development policy. Julie received her B.A. from Brown University in 2005 and her J.D. from Boston College Law School in 2009.
Upon recognizing that many doctors were unfamiliar with narcolepsy, she 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.
In 2009, Julie came out publicly as a person with narcolepsy when she published her first “REM Runner” blog about living and running with narcolepsy. On April 19, 2010, she took on one of the greatest athletic challenges of her life, running the Boston Marathon to raise funds for narcolepsy research at Stanford and Harvard.
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. Her story has been featured by Marie Claire Magazine, Huffington Post, ABC, NBC, Psychology Today, Sirius XM Radio and Discovery Channel.
In 2012 – 2013, Julie successfully led national efforts to secure narcolepsy’s place in FDA’s Patient Focused Drug Development Initiative. Staying up to date on health technology trends, Julie created the first-ever narcolepsy mobile app, awareness video series and infogrpahic to empower advocates with essential communication tools.
Recognizing that many people with narcolepsy feel lost and alone, Julie established the NARCOLEPSY: NOT ALONE international awareness campaign in 2013, collecting over 1,200 photos from all 50 US States and 44 countries around the world.
In 2014, Julie founded Project Sleep, a non-profit organization to make sleep cool. Project Sleep hosts the national SLEEP WALK event series and the Jack & Julie Narcolepsy Scholarship, the first-ever scholarship for students with narcolepsy.
Recently, Julie successfully petitioned Honda to remove an advertisement with an offensive narcolepsy reference, and turned this into an awareness opportunity, working with Honda to create a narcolepsy PSA airing on national TV. Currently living in Los Angeles, Julie works full-time and in her free time, speaks across the country and runs Project Sleep – her dream job.
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