Posts Tagged ‘Narcolepsy Advocacy’
The Stories We Share Today Become the World We Live In Tomorrow
I’m thrilled to share Project Sleep’s new narcolepsy awareness video series. These videos feature five of our Rising Voices of Narcolepsy speakers sharing their personal stories, interwoven with key narcolepsy facts. I hope you will be as moved as I am by these brave stories and share them today: WATCH NOW SHARE ON FACEBOOK TWEET IT Why…
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 MoreViral Narcolepsy with Cataplexy Video
A video of a young woman with narcolepsy and cataplexy has gone viral. Watch below or on YouTube. This is a powerful video and I am grateful to Sarah Elizabeth for bravely sharing her experience! Sarah Elizabeth is primarily experiencing a narcolepsy symptom called cataplexy here. Cataplexy is a sudden loss of muscle tone, resulting in…
Read MoreRaising Narcolepsy Awareness at UCLA Medical School
Last Friday, Jan. 31, I shared my inspirational narcolepsy story at UCLA Medical School. In one hour, we laughed, cried and changed perceptions about narcolepsy in future doctors. The medical students had recently studied narcolepsy in their curriculum – briefly learning the symptoms and watching a few YouTube videos. I was honored to add my patient…
Read MoreNarcolepsy Infographic: What Is Narcolepsy?
I’m so excited to release my narcolepsy infographic! This is the FIRST infographic dedicated to raising awareness about narcolepsy. Please share! Unveiling Narcolepsy Infographic Video: Narcolepsy Infographic: DOWNLOAD FILE Thank you to my amazing graphic designer, Anthony Nesossis. Thank you to Alex Withrow for his pro video production! Read about the making of the infographic here.…
Read MoreResults of the Burden of Narcolepsy Disease (BOND) Study: Guest Post by Dr. Mark Patterson
REM Runner’s Note: I asked my good friend and fellow narcolepsy advocate, Dr. Mark Patterson, to share some important information from the APSS SLEEP 2013 meeting. Thank you so much, Dr. Patterson, for this thoughtful well-written post. Dr. Mark Patterson’s Guest Post: I had the good fortune of attending the 27th Annual Meeting of…
Read MoreRepresenting 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 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 MoreShining Light on Sleep: Julie Flygare Represents Narcolepsy at Congressional Briefing
Room S115 of the U.S. Capitol quickly filled to capacity on Thursday May 31st at 2pm. It was a packed house with standing room only for the Congressional Briefing on the NIH Sleep Disorders Research Plan. Congressional staffers, patient advocates and sleep researchers were all in attendance. The prestigous presenters outlined the significant health and…
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