Diagnosis

I’m thrilled to share some upcoming opportunities to hear me speak this April! Saturday, April 7th at 2:00 p.m. EDT: Webcast with Avadel Pharmaceuticals I’ll give a new 15-minute presentation on “Living Well with Narcolepsy.” Other experts will share about FT 218, once-nightly sodium oxybate, and the ongoing REST-ON Phase III clinical study. Clinical trials are […]

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Last month, I had the honor of giving two presentations to allied health care professionals including physicians, nurse practitioners, respiratory therapists, social work experts, and sleep technologists at the Sweet Dreams & Nightmares Sleep Symposium presented by Tallahassee Memorial Healthcare and the Florida Medical Association. With the west coast to east coast time change, the […]

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Hi friends! I’m so excited to share an amazing opportunity to support critical narcolepsy research THIS WEEK! My Representative, Congressman Schiff of California, is preparing to send a letter to NIH inquiring on the current size, scope, and direction of the narcolepsy portfolio (See Letters). This letter will encourage NIH to support the full spectrum of narcolepsy […]

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Meet Sarah, a mental health professional in Chicago who was diagnosed with narcolepsy in 2015 after facing years of mysterious symptoms and misdiagnoses. In this informative iBehaviorCoach Radio podcast hosted by Matt Lawson, Sarah debunks myths and raises important awareness about narcolepsy and the invisible nature of sleepiness. I eagerly tuned in to hear about Sarah’s experience […]

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This fall, I was BUSY spreading narcolepsy awareness to doctors, medical students and researchers across the country. Upon returning from Italy, I started back at my full-time job in pancreatic cancer advocacy first thing the next morning. The following evening, I traveled to UCLA Medical School to give my narcolepsy presentation for first-year medical students […]

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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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Recently, I was honored to join a group of rockstar advocates and innovators for a fantastic discussion and experimental filming exercise! Check out this awesome first video highlighting narcolepsy, sleepiness and invisible illnesses: When you get invited to an “experimental filming dinner party” in the Hollywood Hills where there’s no cellphone service, you may feel a little uncertain… […]

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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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As a 29-year-old, female journalist and photographer, I am accustomed to the words people use to define me; “Fearless”, “gutsy”, “courageous” are just a few. But, as a woman living with severe narcolepsy, I often struggle to reconcile these one-dimensional characterizations with my own sense of self. That disconnect was recently underscored when I announced […]

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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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