Narcolepsy Advocacy

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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“There are two ways we can increase the public’s understanding of narcolepsy — we can push information out or we can pull them in with our stories.” -Rising Voices of Narcolepsy Workbook People ask me: “How do I get started sharing my story?” Project Sleep’s Rising Voices of Narcolepsy program is my answer, it is leadership […]

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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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