Rare Disease

This Monday, August 8, my presentation, “I Have Narcolepsy. Do You?” will air to tens of thousands of online viewers as part of the Sleep Success Summit. Register for free today. The Sleep Success Summit is a free online event (August 8-15), featuring over 30 experts discussing a wide range of sleep health and sleep disorder topics. With tens of thousands of viewers expected […]

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rising-voices-colour

This month, Project Sleep announced Rising Voices of Narcolepsy ℠, a leadership training program to help people with narcolepsy effectively share their stories through public speaking and writing with local communities, healthcare providers, news outlets, blogs and beyond. On a personal note, this is a huge dream come true for me. It’s such a joy to use my seven years of experience […]

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I’m thrilled to share CBS News Los Angeles’ awesome segment on my experience with narcolepsy. Please WATCH & SHARE (http://cbsloc.al/291UTw6): On Monday June 27, this segment aired during the 5 o’clock evening news, highlighting my sleepiness, cataplexy, and the challenges napping as an adult.  The news piece also mentioned my non-profit, Project Sleep, my book “Wide Awake and Dreaming: A Memoir of Narcolepsy” […]

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This week, I received a very special invitation from the WHITE HOUSE! I am so honored to share that on June 2, 2016, I will join the Medicine X and EveryoneIncluded™ family of rockstar advocates and innovators at the White House for an important discussion on patients as equal partners in research, a core goal of President Obama’s […]

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Recently, ‘Captain America: Civil War’ star Jeremy Renner said that he wanted to be “Captain Narcolepsy… so he could nap whenever he wanted” on Live! with Kelly and Michael. Afterward, many people with narcolepsy and their supporters took to social media to respond. One particular response caught my attention – written by Wendy Ellsworth, a 34-year-old registered nurse living […]

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During lunchtime today, I went to my nap room at work, cuddled up into my lovely blanket from Ireland and quickly fell asleep. Next thing, I awoke to the most AMAZING foot massage!! Oh la la. My feet were sore from intense yoga classes over the weekend, so I really appreciated the free yummy foot massage from…. um…. my phantom foot […]

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I recently created my first Flipagram, highlighting the NARCOLEPSY: NOT ALONE campaign! I hope you enjoy and please share with friends and family. Watch here: Thanks for watching my first Flipagram! NARCOLEPSY: NOT ALONE has over 1,200 photos of people with narcolepsy and supporters from all 50 U.S. States and 48 countries around the world. Of course, this campaign is not […]

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Say HELLO to Ben who shares a monumental message of hope and narcolepsy awareness from 5,800 feet in the air. Thanks to Ben, NARCOLEPSY: NOT ALONE is now inscribed on a scenic snow-topped mountaintop in the French Alps, along a popular chair-lift route for every single ski resort visitor to see until the next snow […]

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This National Sleep Awareness Week, I had the honor of traveling to Ireland to be the keynote speaker at Ireland’s 4th Annual Suddenly Sleepy Saturday Narcolepsy Event on March 12, 2016.  This experience, and my entire trip to Ireland, was totally unforgettable and surreal. After the long journey from Los Angeles to Ireland, I arrive in […]

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Happy Rare Disease Day 2016!

by julie on February 29, 2016

Today, February 29 is Rare Disease Day! With 350 million people around the world living with a rare disease, HUG someone with a RARE DISEASE today. For Rare Disease Day 2016, I was SO honored to contribute to two great articles for Mashable’s Social Good program. Author, Katie Dupere eloquently describes: “For those living with rare […]

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