Rare Disease

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Recently, I received a video from a mother of a young boy with narcolepsy. Warning: I cannot watch this video without crying. Brooke describes: “My 11-year-old son, Owen, was diagnosed with narcolepsy last spring. It was and is scary, and there just isn’t a lot of information out there, especially positive information! So you have […]

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While crossing the finish line of the San Diego Rock n Roll Marathon was an awesome moment, my biggest prize came yesterday when Project Sleep gave out TEN scholarships to students with narcolepsy through the Jack & Julie Narcolepsy Scholarship program. Meet the 2015 Jack & Julie Narcolepsy Scholarship Recipients: View Scholarship Awards Announcement View/Download […]

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Over the weekend, the Executive Producer of The Simpsons, Al Jean, corresponded briefly regarding the Homer Simpson narcolepsy news via Twitter. First, he tweeted “.@thesimpsons Extremely interesting article about the true dangers of narcolepsy” to share the NY Post article on my experience with narcolepsy (re-published from Women’s Health Magazine). View the tweet here and retweet! I responded, […]

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homer simpson narcolepsy

It seems that Hollywood has a surprisingly large percentage of cases of narcolepsy, a disorder affecting 1 in 2,000 people, about 200,000 Americans and 3 million people worldwide, including many children and young adults. The latest Hollywood victim is Homer Simpson. Word on the street is he going to discover he has narcolepsy in the […]

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YOU CAN AND YOU WILL (Marathon Part II)

by julie on June 12, 2015

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As I crossed the start line of the San Diego Rock n Roll Marathon, runners started passing me. I laughed when a pack of Elvis(s) passed me. Typical. “Slow and steady. No one to beat. Nothing to prove,” I told myself. My shirt was drenched with sweat within 3 miles. Soon my hands raisined and […]

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Grand Rounds is the important educational tradition of doctors and healthcare professionals getting together to learn about evolving areas which may be outside of their core practice. However, patients are rarely invited to participate, so sharing my narcolepsy journey at Nova Southeastern University (NSU)’s Grand Rounds on May 8, 2015 was a HUGE honor. This is why, just 24 hours […]

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Running a Marathon for Narcolepsy Scholarship

by julie on February 8, 2015

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It’s official! I’m training to run the San Diego Rock n’ Roll Marathon on May 31, 2015 to support the Jack & Julie Narcolepsy Scholarship. Please consider supporting in one of two ways: Purchase a NARCOLEPSY: NOT ALONE t-shirt or sweatshirt here. Deadline: Feb. 15. Delivered in time to wear for National Narcolepsy Day/Suddenly Sleepy Saturday March 7, […]

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A Day In The Life… NPR Features Narcolepsy

by julie on February 7, 2015

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I’m thrilled that NPR station WHYY featured my story of narcolepsy on the radio today. Listen online here: “A Day In The Life of a Narcoleptic” by Steven Jackson. When the reporter for NPR asked to follow me around for 24 hours, I said “YES!” right away. I’m always looking to raise awareness about narcolepsy.  I am […]

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Daishia West Virginia

This past year has been very tough for Daishia, age 11, who was recently diagnosed with narcolepsy with cataplexy. In addition to narcolepsy, she is also dealing with a seizure disorder, migraines and obstructive and central sleep apnea. “I wish I could take all her pain and struggles away and make things easier for her,” describes her […]

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A Wicked Awesome Moment

by julie on January 23, 2015

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London 2007 F*CK, I slept through Wicked. In February 2007, I was in London for spring break and splurged on an overpriced “half-price” ticket to see my favorite musical, Wicked. I’d listened to the soundtrack a hundred times, but never seen it. The first act was magical, but as the curtains raised for the second […]

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