Project Sleep
Patients Included: Narcolepsy Patient Voice in American Journal of Medicine
The patient’s voice is rarely included in medical journals, but luckily, I love breaking down superficial barriers between patients and medical professionals. Check out: “Narcolepsy: Let the Patient’s Voice Awaken Us”, by Julie Flygare, JD and Sairam Parthasarathy, MD, (American Journal of Medicine, January 2015). I feel so lucky to have collaborated with Dr. Parthasarathy on this project, he’s a doctor…
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 MoreSpeaking at the Hypersomnia Conference 2015
I’m thrilled to be a featured speaker at the Hypersomnia Foundation’s Annual Conference on Fri. July 17 – Sat. July 18, 2015 at Emory Conference Center Hotel in Atlanta, GA. Join us: http://bit.ly/2015HSFConference. I will present two sessions, one sharing my inspiring journey from hiding my narcolepsy to becoming a vocal advocate and a second session on communicating about sleepiness.…
Read MoreNarcolepsy in the News: Narcolepsy Video Featured on Today Show and Inside Edition
Narcolepsy awareness is on FIRE this fall! This is thanks to the narcolepsy PSA series airing on national TV, The Daily Edition segment in Australia and Sarah Wheaton’s video of cataplexy (a symptom of narcolepsy) going viral on Reddit. As a narcolepsy spokesperson and author, it’s great to see narcolepsy gain international media attention. I hope we can continue promoting truthful…
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…
Read More