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Narcolepsy Awareness Video 5: Communicating about Cataplexy
Here’s my latest awareness video offering tips on communicating about cataplexy. Make sure to view in 1080p HD. Watch on YouTube. Enjoy! Thank you to Alex Withrow for his expert video production! Thanks for watching and check back soon for more videos. Watch AllWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video…
Read MoreNarcolepsy on Discovery Channel Featuring Julie Flygare
This Saturday, December 8, 2012 at 8 a.m. (EST) – Discovery Channel airs Narcolepsy: New Strategies for Diagnosis and Treatment, featuring my story, along with a panel of experts and a second patient perspective. The program will air a second time on Saturday, Dec. 22, 2012 at 8 a.m. (EST). It was an honor to work…
Read MoreNarcolepsy Awareness Video 4: What Is Cataplexy?
I’m so excited to release my new narcolepsy awareness video, “What is Cataplexy?” about this major symptom of narcolepsy that is little known by the general public. Watch here or on YouTube. Thank you for watching. Come back soon for a follow-up video on communicating about cataplexy. Many many thanks to Alex Withrow for his…
Read MoreMacy Gray Raises Narcolepsy Awareness
“Narcolepsy can be really damaging to your quality of life.” – Macy Gray Macy Gray recently spoke about narcolepsy in an in-depth interview with HuffPost Live. Macy stated that a close family member has struggled with narcolepsy for many years. “It’s very debilitating,” explained Macy Gray, a world-famous singer-songwriter, record producer and actress. Our narcolepsy wizard,…
Read MoreNarcolepsy Awareness Video 3: Communicating Invisible Symptoms
Narcolepsy symptoms are very real, but often invisible to outsiders. I’m thrilled to release my third narcolepsy awareness video, sharing a personal story of communicating with my loved ones about invisible symptoms. The interview was recorded a few weeks ago hence the same outfit from my intro video. To my lovely ladies: Lexie, Phoebe, Melissa and…
Read MoreSecond Narcolepsy Awareness Video from the NN Conference: Communicating about Sleepiness
I’m excited to release my second narcolepsy awareness video, shot at the 2012 Narcolepsy Network (NN) Annual Conference in Cleveland, OH. Thank you for all those who attended my sessions! In this video, I re-cap my conference experience and offer a few strategies for communicating about the excessive daytime sleepiness (EDS) of narcolepsy. Watch below…
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 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 MoreNice News Segment on Narcolepsy with Cataplexy
This segment features a lovely young woman, Kay Underwood, living with narcolepsy and cataplexy. GMTV accurately and effectively highlighted narcolepsy with cataplexy. Hip hip hurray! This video shows Kay collapsing while laughing – but she is not falling over asleep – she’s falling over with the paralysis of dream sleep while awake. Why is Kay Underwood collapsing when she…
Read MoreNational Geographic Channel Features Narcolepsy with Cataplexy on Taboo: Strange Behavior (Video Preview)
On Sunday, June 24, 2012, 10pm ET, National Geographic Channel will air Taboo: Strange Behavior featuring narcolepsy with cataplexy. Watch a short video preview of National Geographic Channel Taboo: Strange Behavior featuring Narcolepsy here. This preview highlights cataplexy, a symptom of narcolepsy when emotions (humor, annoyance, joy, anger) causes loss of muscle tone without loss of consciousness.…
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