Resources
YOUR STORY MATTERS: Introducing Rising Voices of Narcolepsy ℠
This month, Project Sleep announced Rising Voices of Narcolepsy ℠, a leadership training program to help people with narcolepsy effectively share their stories through public speaking and writing with local communities, healthcare providers, news outlets, blogs and beyond. On a personal note, this is a huge dream come true for me. It’s such a joy to use my seven years of experience…
Read MoreWhat does cataplexy look like? GIF by Eleanor of www.Falling-Asleep.com
Check out this amazing depiction of terrifying symptom of #narcolepsy called CATAPLEXY – created by Eleanor of Falling Asleep: A Narcolepsy Guidebook. Please note: this character is fully conscious and awake yet crumbling to the ground paralyzed. It’s terrifying. For more infographics, blogs and resources: www.falling-asleep.com Commentary by Julie Flygare: I was 22 when my knees fight buckled while…
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 MoreWorking with Narcolepsy: Part III – When Caring Comes Naturally
After my boss and leadership got even more involved – the nap room situation improved quickly. (Read Part I and Part II of this story.) Nap Bench on the Move: The nap bench was moved again, this time to a small room on the second floor along a nice secluded quiet hallway. The door’s sign was changed to Wellness Room.…
Read MoreRaising Narcolepsy Awareness at Nova Southeastern University
Grand Rounds is the important educational tradition of doctors and healthcare professionals getting together to learn about evolving areas which may be outside of their core practice. However, patients are rarely invited to participate, so sharing my narcolepsy journey at Nova Southeastern University (NSU)’s Grand Rounds on May 8, 2015 was a HUGE honor. This is why, just 24 hours…
Read MoreThe 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 MoreRunning a Marathon for Narcolepsy Scholarship
It’s official! I’m training to run the San Diego Rock n’ Roll Marathon on May 31, 2015 to support the Jack & Julie Narcolepsy Scholarship. Please consider supporting in one of two ways: Purchase a NARCOLEPSY: NOT ALONE t-shirt or sweatshirt here. Deadline: Feb. 15. Delivered in time to wear for National Narcolepsy Day/Suddenly Sleepy Saturday March 7,…
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 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 MoreFilming the Honda Narcolepsy PSA
Over the past few months, I’ve worked with Honda and a Honda agency, RPA, to create a narcolepsy public service announcement (PSA). I’m so proud and honored to have served as a real face and voice of narcolepsy for this project. In preparation, I shared my memoir, fact sheets, patient experience and key awareness points. It…
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