Narcolepsy
Tips for Students with Narcolepsy Video
I’m thrilled to release my 14th narcolepsy awareness video! This video offers tips for students with narcolepsy based on my personal experience and various community members’ input. Everyone is different – please share tips in the comments below. Check back soon for more videos! Thank you to Alex Withrow for his expert video production. Watch…
Read MoreSchool Accommodations with Narcolepsy Video
My latest video describes accommodations for succeeding in school with narcolepsy. Watch below or on YouTube: Check back soon for more videos. Thank you to Alex Withrow for generously giving his time and pro filming skills to make this possible! Watch full video series Watch Video #19: Riding the Waves of Narcolepsy – Waterskiing with…
Read MoreNarcolepsy selected for FDA Patient Focused Drug Development Initiative (PFDDI)
I’m thrilled to announce that NARCOLEPSY has been selected for FDA’s Patient-focused Drug Development Initiative (PFDDI). Narcolepsy has been selected as one of the initial 12 disease areas for individual evaluation to be addressed in FY 2013 – FY 2015. We did it! I testified in person and led the campaign for online comments.…
Read MoreHow Awake Are You? Game Measures Sleepiness
Recently, I discovered Harvard’s Healthy Sleep website featuring the “How Awake Are You?” interactive game. In 5 minutes, it analyzes your wakefulness. Th game is an online adaptation of performance tests commonly used in research labs to examine the effects of sleep deprivation. When I played, I felt a bit sleepy and the program picked up…
Read MoreAttending the World’s Largest Electonic Music Festival with Narcolepsy
My boyfriend, Alex recently surprised me with a trip to Ultra Music Festival in Miami, FL – the world’s largest electronic concert. As a music lover, I was thrilled. As a person with narcolepsy, I was nervous. Over 300,000 people attend this three day dance party with seven stages and over 150 performers including world-famous Tiesto,…
Read MoreNarcolepsy Isn’t Like the Movies: 16 Secret Signs of Daytime Sleepiness
We all know the punch line of the narcolepsy joke – person falls asleep while standing or in the middle of the conversation. My daytime sleepiness doesn’t look like this. On the surface, it doesn’t look like much of anything. Internally – my sleepiness aches. My limbs become heavy and pressure pushes on my skull.…
Read MoreREM Runner’s Top 9 Inspiring Female Health Advocates Part III
In honor of Women’s History Month, I am profiling nine female health advocates who inspire me to follow my dreams. These women are trailblazers – leading the way for other women to optimize their health and triumph over adversity. Read Part I and Part II. Here’s my final three women: Brené Brown, Researcher & Storyteller Brené Brown, Ph.D. is…
Read MoreDating with Narcolepsy: We’re Better In Bed
A mother of a 9-year-old girl with narcolepsy and cataplexy recently thanked me for my book and narcolepsy leadership, saying, “You give me hope that my little girl can grow up and have a good life. You prove that she can go to college and do great things… You prove she can even have a…
Read MoreNarcolepsy Videos Featured on EmpowHER
Recently, I shared my story of narcolepsy with renowned women’s health advocate and EmpowHER founder, Michelle King Robson. EmpowHER is an award-winning social health company for women, providing visitors access to one of the largest women’s health and wellness content libraries on the web, as well as the largest online community of women discussing their…
Read MoreDr. Mignot Discusses Current State of Narcolepsy Research with NIH’s Dr. Twery
Dr. Michael Twery (Director of the National Center on Sleep Disorders Research at NHLBI) recently discussed narcolepsy research with leading expert, Dr. Mignot (of Stanford University). This video provides a great overview of why narcolepsy develops in certain individuals and the innovative treatments on the horizon for this neurological illness! Thank you Dr. Twery, Dr. Mignot and NHLBI…
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