Narcolepsy News

This past week, I was honored to represent Project Sleep at the 7th International Symposium on Narcolepsy from Sept 9 – 13, 2018 in Beverly, MA. At this meeting, leading narcolepsy researchers and clinicians from around the world came together to discuss developments in the clinical features of narcolepsy, promising treatment advances, and the underlying neurobiology […]

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Last week, I was thrilled to spend the afternoon with Dr. Emmanuel Mignot and Watson (Dr. Mignot’s chihuahua living with narcolepsy with cataplexy). Together, we recorded Project Sleep’s first Facebook Live video at Stanford Medical School. In this “Ask Us Anything” FB Live video, we fielded a wide variety of questions from the future of […]

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Please join Project Sleep in Boston for “Innovations in Narcolepsy Awareness” on Saturday, Sept. 15, from 10 a.m. – 4 p.m. at the NonProfit Center (89 South Street, Boston, MA – one block from South Station). This one-day meeting and interactive workshop will empower and educate advocates while also advancing novel approaches to educating the public […]

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Friends! I’m super excited to share that on Tuesday, Sept. 4, at 7 p.m. ET, Project Sleep will host a very special “Ask Us Anything” Facebook Live event, featuring myself along with Emmanuel Mignot, M.D. Ph.D., Director of the Stanford Center for Sleep Sciences and Medicine, and Watson, a chihuahua with narcolepsy. We will answer as many of your […]

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Friends, I’m so honored to be a speaker on an upcoming webinar, “Translating the Patient Story into Action” taking place on Wednesday, August 22nd at 2:00 p.m. ET.  Please register today to save your spot! This event is hosted by the Society for Participatory Medicine, one of my very favorite organizations ever. The Society for Participatory Medicine […]

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I’m so excited to release the video above. It’s an important topic I’ve been meaning to address for a while. This video is important for media representatives covering narcolepsy in the news, researchers, clinicians, drug developers, and last but not least, people with narcolepsy and their loved one aiming to raise awareness and reduce stigma for narcolepsy. […]

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One of my biggest takeaways from the APSS 2018 SLEEP Meeting last month was the great amount of drug development underway for narcolepsy! Below is a list of some of the emerging treatments “abuzz” at #SLEEP2018. These are at various stages in development, and it’s hard to predict how quickly each will advance to (hopefully) gain […]

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I recently returned from Sweden, where I was honored to be the keynote speaker at a narcolepsy event hosted by Narkolepsi Föreningen, an association for people affected by narcolepsy due to the Pandemrix vaccine against swine flu in 2009-2010 and their relatives.  The retreat took place on May 11-13, 2018, but I traveled to Sweden a week early […]

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I’m extremely honored to be featured in Giving Tuesday’s #WomenWhoGive campaign series. which celebrates women who are making a difference in their communities. However, when I read the interview questions, I sighed heavily. “What inspired you to start giving?” What inspired me? How could I answer this “nicely” when this is what came to mind: I […]

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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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