Posts Tagged ‘Narcolepsy’
When your book becomes a book…
If you set out to write a book, prepare to dig deep. For the longest of excruciating long times, you will be “in the process” and have little to show for it. For yourself. For your dream. Just one Word Doc that you keep re-naming with the new date as time rushes by. You will…
Read MoreGathering for Families of Children with Narcolepsy in Washington DC
Has your child or teen been diagnosed with narcolepsy? You and your family are not alone! Next Saturday, my amazing Washington DC support group is hosting a get-together for young adults and families with narcolepsy. Families, caregivers and friends come together for an informative afternoon. Teens and young adults with narcolepsy are also encouraged to attend…
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 MoreThings I love: Powerful Poetry
Tears on my faceby: Elizabeth Olsen Tears on my face,No place to go Mind stuck in time, Body out of control. Burning inside A feeling I died Things that are not there Sounds I can share Hope is fleeting Time defeating Who would dare A battle unfair Light traps the dream I can not scream…
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 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 MoreSleep’s Choice: Living with Narcolepsy’s Excessive Daytime Sleepiness
Every day, at least once, but usually twice, my head gets heavy, as if a weight sits on my skull, and I know, right then, that sleep is coming. If I don’t put my head down immediately, the heaviness only gets heavier. My joints begin to ache and a wave of nausea comes over me.…
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…
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