Narcolepsy
Representing People with Narcolepsy at the FDA
Yesterday, I had the extraordinary honor of visiting the Food and Drug Administration (FDA) to urge them to include Narcolepsy in the ground-breaking Patient-Focused Drug Development initiative. I was #19 to sign up on the disease nomination speaker list, even though I arrived 15 minutes before registration technically opened. The large conference room quickly filled…
Read MoreJoin me: Urge FDA to include Narcolepsy in new patient-focused initiative
The Food and Drug Administration (FDA) has nominated “narcolepsy” for a groundbreaking new patient-focused drug development initiative. Only 20 diseases will be chosen. Please join me in urging the FDA to select “narcolepsy” for this important effort. About the FDA Initiative:“Narcolepsy” is one of 39 disease areas nominated for a new FDA initiative to better inform the FDA’s drug and…
Read MoreJulie Flygare’s Memoir Highlighted in Caring Voice Community Magazine
An excerpt from my upcoming narcolepsy memoir, “Wide Awake and Dreaming” is featured in Caring Voice Community Magazine’s Fall 2012 edition. Also, please check out my accompanying column, “Writing Therapy: How the act of writing can relieve the heaviest of burdens,” where I explore the challenges and benefits of writing about narcolepsy. I open the…
Read MoreJulie Flygare Launches Narcolepsy Awareness Video Campaign
I’m so thrilled to launch my narcolepsy awareness video series. I’ve dreamed of this project for many moons. It’s surreal to see it through. Watch my introductory video here or on YouTube. Thank you so much for checking out my video! I will be adding exciting new content regularly, so check back soon. Many thanks…
Read MoreCalling All Creative Cats: The Sleepiest Pumpkin Patch 2012
For the third year in a row, I’m inviting all Halloween enthusiasts to design sleep-themed pumpkins for REM Runner’s Virtual Pumpkin Patch! 1. Create your own SLEEP/DREAM-themed PUMPKIN. Be creative – Is your pumpkin having a dream or nightmare? Snoring? Cat-napping? Anything sleep or dream related goes. 2. Send me a photo of your pumpkin…
Read More“Sleepwalk With Me” Movie Raises Awareness about Sleep Disorders
“Sleepwalk With Me” is a must-see movie for everyone, especially the 40 million Americans challenged by sleep. The film features a struggling comedian, who is driving cross-country for low-end gigs, while managing a rocky relationship and odd incidents of acting out his dreams at night. I’m a big fan of Mike Birbiglia, the writer, director, and star…
Read MoreDon’t Mess With My Sleep: Makenna’s Walk for Narcolepsy Research
At age five, Makenna was a healthy bright child in Kindergarten, with a great sense of humor and a charming magnetic personality. Under the Weather:In February 2011, Makenna came down with pneumonia. She was very sick and admitted to the Children’s Hospital for IV Antibiotics. She recovered from the infection, but never got her strength…
Read MoreDo I Forgive Myself For Having Narcolepsy? Fostering Self-Love With Chronic Illness
“Do I forgive myself for having narcolepsy?” I wondered recently. What a terrible question to ask myself. I didn’t cause my narcolepsy… so why would I need to forgive myself? I aim to inspire others, yet I’m still battling my own demons. Am I a phony? Five years ago, I found the words narcolepsy and cataplexy, a…
Read MoreJulie Flygare Interviewed About Narcolepsy Advocacy For Siren Interactive Blog
Last week, Siren Interactive invited a few rare disease patient leaders to attend the Rare Disease and Orphan Drug Leadership Congress in Philadelphia. Siren facilitated conversations around the topic of how biopharmaceutical companies can and should engage with patients. In this great blog post, Siren features videos of our experiences and our paths to becoming…
Read MoreJulie Flygare Writes Narcolepsy Patient Perspective Guest Blog Post on PsychologyToday.com
I’m thrilled to share my guest blog post, “Notes on Narcolepsy: Part 3 – From the Patient’s Perspective,” on Psychology Today’s “The Land of Nod” Blog by Dr. Shelby Harris. Dr. Harris is a friend, a clinical psychologist and the Director of the Behavioral Sleep Medicine Program at Montefiore Medical Center. For this post, she asked me to…
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