narcolepsy educational tools

Screen shot 2015-06-20 at 3.17.56 PM.png

Recently, I received a video from a mother of a young boy with narcolepsy. Warning: I cannot watch this video without crying. Brooke describes: “My 11-year-old son, Owen, was diagnosed with narcolepsy last spring. It was and is scary, and there just isn’t a lot of information out there, especially positive information! So you have […]

{ 2 comments }

Screen shot 2015-05-17 at 10.47.53 PM

“What could I say that they don’t already know?” This question haunted me in the months, weeks and days leading up to Narcolepsy Support Australia Conference. Over a year ago, when NSG Australia’s leader-extraordinaire, Melissa asked me to be a keynote speaker at their inaugural patient conference, I said “Yes!!!” right away. No question, I wouldn’t miss […]

{ 0 comments }

Why I am Running a Marathon

by julie on April 15, 2015

After Running 16 miles on Sunday

Recently, I was featured as a Boston College “Soaring Eagle”   – for writing my memoir and founding Project Sleep. This was a huge honor, but also very ironic. While at BC Law, I felt like a total failure. Diagnosed with narcolepsy at the beginning of my second year, I scolded myself for falling behind and never securing […]

{ 0 comments }

A Day In The Life… NPR Features Narcolepsy

by julie on February 7, 2015

a day in the life of narcoleptic julie flygare narcolepsy the pulse whyy npr radio

I’m thrilled that NPR station WHYY featured my story of narcolepsy on the radio today. Listen online here: “A Day In The Life of a Narcoleptic” by Steven Jackson. When the reporter for NPR asked to follow me around for 24 hours, I said “YES!” right away. I’m always looking to raise awareness about narcolepsy.  I am […]

{ 3 comments }

narcolepsy 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 […]

{ 3 comments }

narcolepsy scholarship students college high school seniors education narcolespy awareness

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, […]

{ 0 comments }

Putting the RUNNER back in REM Runner!

by julie on December 30, 2014

rem runner julie flygare narcolepsy scholarship runner san diego marathon

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 […]

{ 6 comments }

rem runner blog narcolepsy blog julie flygare narcoleptic awarness sleepiness cataplexy living with narcolepsy medications

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 […]

{ 0 comments }

SpoonGirlHat

My boyfriend and I speak in spoons. If you don’t know what I’m talking about, read The Spoon Theory by Christine Miserandino now. Seriously, stop everything and visit: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/. Alex has been really supportive of my narcolepsy from day one. We quickly fell into great routines for managing my excessive sleepiness and cataplexy. Yet, my narcolepsy is so much more than […]

{ 4 comments }

Speaking at the Hypersomnia Conference 2015

by julie on December 16, 2014

hypersomniafoundation_logofinal-01

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. […]

{ 2 comments }