narcolepsy educational tools
Podcast: A conversation about narcolepsy, Homer Simpson, memoir writing and marathon running.
Check out this fun podcast! I was so honored to be featured on “Just Talking Podcast” with Christopher Snider. I met Chris at MedX, he is the creator of mydiabetessecret.com and an incredible role model and ePatient leader who is shining a bright light on the power of the patient voice. It’s funny when someone you look…
Read MoreCelebrating 3 years of Wide Awake and Dreaming: A Memoir of Narcolepsy – An Honest Reflection
Writing for me is time-traveling. On January 16, 2012, I sipped a steaming hot soy latte at my favorite coffee shop in Arlington, Virginia, cued up the classical piano in my headphones and closed my eyes. Here we go! On this day, my time-traveling destination was a hotel room in Albany, New York – four years earlier. The subject…
Read MoreWATCH NOW: MedX 2015 Ignite! Talk by Narcolepsy Advocate, Julie Flygare
I’m thrilled to share my 5-minute Ignite! Talk from Stanford Medicine X 2015. Please share with friends and family to raise narcolepsy awareness (https://youtu.be/MXTd8xd_f8s). In this video, I describe my journey with narcolepsy from people laughing in my face to living proudly and creating the NARCOLEPSY: NOT ALONE campaign. I emphasize how feeling “misunderstood and alone” with…
Read MoreMy First Standing Ovation – Speaking at the Hypersomnia Conference 2015
Recently, I traveled to Atlanta to speak at the Hypersomnia Conference 2015. The conference featured a great variety of support groups and fantastic presentations by medical leaders, educational experts, patient advocates and a disabilities attorney. Uniquely, the conference also included hypersomnia, narcolepsy and KLS speakers and attendees, so we could share and learn from each…
Read MoreWorking with Narcolepsy: Part I – I Fought the Nap and the Nap Won.
On Friday, I was so surprised to be awarded a Values In Action (VIA) award for “Excellence” at work! As I approached the stage, the presenter read the comments from my nomination: Julie is always excited to take on any new task. She approaches her work with enthusiasm, regardless of how big or small the assignment is.…
Read MoreMeet Owen, 11 Year Old Boy Living with Narcolepsy
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…
Read MoreVisiting Australia for the Narcolepsy Support Australia Conference
“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…
Read MoreWhy I am Running a Marathon
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…
Read MoreA Day In The Life… NPR Features Narcolepsy
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…
Read MorePatients 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…
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