Medication
The Doctors Show Features My Story with Narcolepsy
Tune in to the Doctors TV Show this Monday Feb. 9, I’ll be sharing my journey with narcolepsy – including sleepiness, cataplexy, sleep paralysis and hypnagogic hallucinations . See full information here. Watch TV interview online: Crafting an honest and accurate portrayal of narcolepsy with the Doctors TV Show was a lot of fun. I was blown away…
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…
Read MoreWatch Now: International Narcolepsy Broadcast
Thank you to everyone who tuned in today for my international narcolepsy broadcast! If you missed it, watch on YouTube or below: Friends all over the US and around the world in Canada, Europe and Australia watched live! Thank you for your incredible support. Happy Suddenly Sleepy Saturday!
Read MoreJoin Julie for International Narcolepsy Broadcast on Suddenly Sleepy Saturday
Join me for a FREE international live broadcast, “Celebrating Narcolepsy Awareness” on Suddenly Sleepy Saturday, March 8, 2014 at 4:00 p.m. (EST). This presentation offers vivid description of the narcolepsy journey from mysterious symptoms to diagnosis and treatment. Highlights my inspiring transformation from hiding narcolepsy to living proud and out loud as a spokesperson. Register below…
Read MoreFDA Narcolepsy Meeting Video – Watch Now!
The Webcast Recordings of FDA’s Narcolepsy Meeting on Sept. 24, 2013 are now available. Watch Here: PART 1 – Opening to Break PART 2 – Break to Closing Get Involved: REM Runner’s Recap and Photos Take the Unite Narcolepsy Survey Submit Comments to the FDA Docket
Read MoreUnite Narcolepsy Interim Survey Results Paint Honest Picture of Challenges Facing Narcolepsy Community
In just six week, the Unite Narcolepsy’s patient survey has collected over 1,350 responses, including over 1,000 responses directly from patients diagnosed with narcolepsy. The survey results paint a powerful picture of the challenges facing the narcolepsy community – including extensive delays in diagnosis and many unmet medical needs. The Interim Survey Analysis will be shared…
Read MoreTreatment for Narcolepsy: Julie Flygare Narcolepsy Awareness Video #22
I’m so thrilled to release my 22nd awareness video, providing an overview of the treatment options for narcolepsy, emphasizing the importance of naps, lifestyle changes and having a strong support system. Watch here or on YouTube: Thank you for checking out my video. A big thank you to the amazing Alex Withrow for his pro video…
Read MoreSave the Date: FDA Narcolepsy Public Meeting on Sept 24, 2013
Interested in shaping future narcolepsy drug development? Here’s your chance! On September 24, 2013, FDA will host the Narcolepsy Public Meeting to obtain patients’ perspectives on the impact of narcolepsy on daily life as well as the available therapies for narcolepsy. This past year, we worked together to secure this tremendous opportunity with FDA. The September 24 meeting…
Read MoreWhat To Say & NOT Say to Narcolepsy Patients
While speaking at SLEEP 2013, a doctor asked a great question: “Are there things I should or shouldn’t say to my narcolepsy patients?” The question caught me off-guard. It was so… thoughtful! Our panel provided some tips. Please add your suggestions in the comments below. What doctors should Say: Set reasonable expectations of working together long…
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