Overcoming Adversity
5th Grader Raises Narcolepsy Awareness at School
This past year has been very tough for Daishia, age 11, who was recently diagnosed with narcolepsy with cataplexy. In addition to narcolepsy, she is also dealing with a seizure disorder, migraines and obstructive and central sleep apnea. “I wish I could take all her pain and struggles away and make things easier for her,” describes her…
Read MoreA Wicked Awesome Moment
London 2007 F*CK, I slept through Wicked. In February 2007, I was in London for spring break and splurged on an overpriced “half-price” ticket to see my favorite musical, Wicked. I’d listened to the soundtrack a hundred times, but never seen it. The first act was magical, but as the curtains raised for the second…
Read MoreWhy I Love the Jack & Julie Narcolepsy Scholarship
I’m thrilled to share that Project Sleep unveiled the Jack & Julie Narcolepsy Scholarship 2015 to support students with narcolepsy while also fostering awareness of this often misunderstood disorder in high school and collegiate settings. This spring, three high school seniors will be awarded $1,000 toward their college education. Please read FULL application for details. Last year,…
Read MorePutting the RUNNER back in REM Runner!
Tonight, I was glowing after my very first training to prepare for the San Diego Rock n Roll Marathon on May 31, 2015 to raise funds for the Jack & Julie Narcolepsy Scholarship! I was going to wait to make a big announcement but I had to share this now. I’ve been feeling overweight, dark…
Read MoreFor Your Consideration: VOTE for Narcolepsy Blog in Best Health Blog Contest
Friends, please vote for the REM Runner blog in the Best Health Blogs Contest. It takes 2 seconds to vote via FB or Twitter, once per day. Click here to vote! Why vote? 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…
Read MoreVideo: Truth about Narcolepsy – Julie Flygare’s Live TV Interview
Some are calling it the best news segment on narcolepsy yet! On Nov. 25, 2014, I was thrilled to be featured on The Daily Edition’s “Truth about Narcolepsy” segment airing on Channel 7 in Australia. Monique Wright interviewed myself and Dr. David Cunnington in Melbourne. Watch now: Visiting Channel 7’s Los Angeles studio was a lot of…
Read MoreGuest on HuffPost Live: The Psychological Side of Illness
The psychological side of coping with narcolepsy is sometimes as challenging as the physical. I was thrilled to join HuffPost Live for an important discussion, “How To Manage The Psychological Side Of Illness” on Friday, Nov. 21, 2014. Watch below or here: Host Nancy Redd welcomed an inspiring panel of health advocates including yours truly, Juile Flygare (@REMRunner) Founder…
Read MoreCelebrating 5 Years of Narcolepsy Advocacy
This week marks five years as a narcolepsy advocate. When I published my first REM Runner blog post, I “came out” publicly after two years of hush-hush. I didn’t know where this would lead me, but every fiber in me ached to speak up and make change. Once I began, I watched myself devote time and energy I didn’t know I had. The momentum…
Read MoreWatch Now: How a Patient Helped Define A New Clinical Endpoint with FDA
How did I catch the “Advocacy Bug”? Why is the patient voice important? Watch my TED-style talk on the power of narcolepsy advocates working directly with FDA to build a brighter future. I gave this speech to over 300 clinical trial development experts in the pharmaceutical industry at the Disruptive Innovations Conference in Boston, MA on Sept.…
Read MoreWatch Now: Narcolepsy PSA Created with Honda Before TV Airing
I’m thrilled to share the narcolepsy public service announcement (PSA) created in collaboration with Honda. It was a huge honor to serve as a real voice and face of narcolepsy in this 30-second PSA, to air on TV in the next month. View here: Project Sleep’s Press Release: Bad Narcolepsy Joke Turns Honda into Awareness…
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