narcolepsy memoir

[Photo: Julie with Dominique Friend, Sickle Cell Disease Advocate] This Wednesday, I had the honor of speaking on the Patient Advocate Panel at the “InnovationPharm Event” hosted by Siren Interactive, in conjunction with the 7th Annual Rare Disease and Orphan Drug Leadership Congress in Philadelphia, PA. The round-table discussion over dinner focused on how pharmaceutical companies can […]

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Heartbeats: Finding Mine Again

by julie on July 17, 2012

“Where there are no words… know the silences are carrying the thoughts and prayers of all who love you.” -Dawn Dais  “What is this?” I wondered, placing my hands on my collar bone to get as close as possible to the problem. I sat in my parked car and looked out into the rain. Six […]

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Before I Die…

by julie on July 16, 2012

“Before I die…” caught me off-guard on Saturday. I was driving down 14th street NW in DC, when I slammed on the brakes and pulled over. I didn’t know what to expect, but the beautiful messages of hope and love made my day! I took photos but  didn’t contribute to the wall. I mulled it over […]

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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] […]

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“Don’t be afraid of the space between your dreams and reality. If you can dream it, you can make it so.” I dream a lot, but one dream stood out recently: I saw myself  in a handstand position – whirling my legs around like I was an acrobatic superstar. Um, yeah right. I love yoga, […]

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I signed up for an art journaling workshop at Tranquil Space last summer, and almost didn’t go because I feared “wasting my time.”  I’ll never forget when the wonderful instructor, Kimberly said, “Write down what you want by this time next year, July 23, 2012.” My whole body clenched up. Somewhere along the way, I’d forgotten that […]

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Touching My Narcolepsy Memoir

by julie on July 2, 2012

“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 […]

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REM Runner’s Summer Reading

by julie on June 24, 2012

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. […]

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To Fly: Running Mt Washington Road Race

by julie on June 20, 2012

I started this journey with a broken heart; I felt lost and alone without my Dad. I wanted so badly to re-connect with him on the mountain. While training, I faced fears and trampled over my comfort zone many times. I gained support from people near and far. By race day, my heart was filled with love […]

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Mt Washington Road Race 2012 Video

by julie on June 18, 2012

Pictures are worth a thousand words. Here’s a short video re-capping my quest to honor my dad in the Mount Washington Road Race 2012 while living with narcolepsy.   Music: “We Can” by Jesse Ruben. This song helped me up the mountain. The artist generously gave me permission to use it in my video, so […]

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