narcolepsy memoir
Julie 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 Cover Narcolepsy Story for Caring Voice Coalition’ Community Magazine
The Summer 2012 edition of Community Magazine is out and hotter than ever! I really enjoyed writing the cover story and working with Caring Voice Coalition’s team – they are passionate about patients! Check out my feature narcolepsy article, “In Sickness and In Health” pg. 16-19: [issuu width=420 height=272 backgroundColor=%23222222 documentId=120627200108-e7727450584c4c56af6093c6d21d4463 name=cvc_summer2012 username=rocketpop tag=cvc unit=px v=2]…
Read MoreTouching My Narcolepsy Memoir
“If there’s a book you really want to readbut it hasn’t been written yet, then you must write it.”-Toni Morrison First, I held my book in my head. Next, I moved it to my computer. This weekend, I held my manuscript in my arms for the first time! It was magical (and heavy). I couldn’t help but…
Read MoreREM Runner’s Summer Reading
I love summer. Lightening bugs, late sunsets, weddings, and trips to the beach! Here’s what is in my beach bag this summer: ISLAND PRACTICE Cobblestone Rash, Underground Tom, and Other Adventures of a Nantucket Doctor by Pam Belluck A spirited true story of a colorful, contrarian doctor on Nantucket, a world-famous yet strikingly offbeat corner of America. Dr.…
Read MoreREM Runner Attends SLEEP 2012 Conference
I had the honor of attending SLEEP 2012 in Boston, MA last week. This conference brought together sleep doctors and researchers from around the world. I volunteered at Wake Up Narcolepsy’s exhibition hall booth. It was great to see familiar faces and meet many new people. Narcolepsy was very well represented at SLEEP 2012 with…
Read MoreMarie Claire Magazine Narcolepsy Article Makes A Difference
On the path to narcolepsy diagnosis, there is an “A-ha!” moment when you find words that accurately describe your experiences. I remember mine perfectly. For one woman, Valentine Bernard, her A-ha! moment came last October at the grocery store: “Bernard had no idea what was wrong with her until she came upon the October 2011 issue of…
Read MoreUnbelievable Broad For A Day – My Interview on Sirius XM Radio
“Am I dreaming?” I asked myself, walking into the Sirius XM Radio studios this morning. I peered into each soundproof spaceship-like studio with wide eyes. Today, I was a guest on the BROADMINDED show – the honor of a lifetime. Strangely, I wasn’t nervous. The Broads, Christine and Molly, are funny, friendly and down-to-earth. Besides…
Read MoreJulie Flygare’s Memoir Pitch at Pitchapalooza Featured by Georgetown Patch
Politics and Prose was buzzing with excitement and nerves on the night of Pitchapalooza. When I arrived right at 7pm, all the seats were taken, with people spilling into the various sections of the store to get a glimpse. In total, there were about 80 people in attendance. Twenty names would be…
Read MoreJulie Flygare Presents about Narcolepsy at Harvard Medical School
Last night, I practically skipped up the white marble stairs to Harvard Medical School. My neurologist met me inside one of the fancy marble buildings. We said hello quickly and ducked into the classroom. I recognized this classroom. I’d presented here four years ago with my neurologist. At the time, I was less than…
Read MoreMemoir Milestones – Finishing My Book
After graduating from law school, I set out on a raft into the ocean… Or close enough, I set out to write a memoir. I wanted to open people’s hearts to narcolepsy. I’d studied the challenges facing people with narcolepsy while in law school – laws, regulations, policies, procedures, politics. I felt that a…
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