I’m excited to share, ”Narcolepsy Patients Hope FDA Attention Will Spur Drug Research, Shed Misperceptions” by Brenda Sandburg, The Pink Sheet, May 13, 2013. [View/Download PDF] This great article describes narcolepsy’s inclusion in FDA’s Patient Focused Drug Development Iniative. Thank you Ms. Sandburg and the Pink Sheet for featuring narcolepsy in your publication! More Info:Narcolepsy Selected for [...]
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My latest video, “Debunking the Narcolepsy Myth” challenges perceptions of people with narcolepsy falling asleep in the middle of a conversation or while standing and educates about real symptoms. Thanks for watching! Thank you to Alex Withrow for his expert video production. Watch full video series Watch Video #15: Narcolepsy Chosen for FDA InitiativeWatch Video #14: [...]
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A welcome reminderTo let go,Let sleep wash in,Knowing I will rise again,and take on the world. All in good time. I discovered this image on Pinterest and had to share! Link to print on Etsy. Xoxo, REM Runner
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On Friday afternoon, I had the pleasure of being on the Dr. Don Show to talk about Wide Awake and Dreaming: A Memoir of Narcolepsy. Listen online here. Friday’s show aired live on two Arizona radio stations (KAAA 1230 AM and KZZZ 1490 AM). It was so much fun to discuss my book with Dr. [...]
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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 #14: Tips for Students with NarcolepsyWatch video #12: National [...]
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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. [...]
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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 [...]
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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. [...]
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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. Part I highlighted leaders in Women’s Health issues. Today, I present 3 superstar sleep advocates: 4. Arianna [...]
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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 [...]
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