Ready for Awareness? World Narcolepsy Day 2020 is one month away!
Less than one month until World Narcolepsy Day on Sept. 22, 2020, and I cannot wait for this second annual day dedicated to raising narcolepsy awareness on a global scale. World Narcolepsy Day 2020 is co-led by 26 non-profit patient advocacy organizations on six continents around the world. See all the orgs listed here. Last…Read More
Share! Narcolepsy with Cataplexy PSA Video with Ode to Joy Movie
Friends: I’m SO beyond thrilled to share the news with you today that Project Sleep proudly partnered with IFC Films and Ode to Joy Director, Jason Winer, to create a PSA to raise awareness about narcolepsy with cataplexy. Please watch and share with friends! Teamwork makes the dream work I am so grateful to Jason…Read More
“Ode to Joy” Movie Review From A Person Living with Narcolepsy with Cataplexy
Today, the new feature film, Ode to Joy opens in select theaters (in New York and Los Angeles) and releases via video on demand across the United States. Ode to Joy is a movie about a man, Charlie (played by Martin Freeman) navigating romance while living with narcolepsy with cataplexy. I was not involved in the development…Read More
The Stories We Share Today Become the World We Live In Tomorrow
I’m thrilled to share Project Sleep’s new narcolepsy awareness video series. These videos feature five of our Rising Voices of Narcolepsy speakers sharing their personal stories, interwoven with key narcolepsy facts. I hope you will be as moved as I am by these brave stories and share them today: WATCH NOW SHARE ON FACEBOOK TWEET IT Why…Read More
WATCH NOW: “Translating the Patient Story into Action”
Interested in raising awareness but not sure how to start? This awesome webinar, “Translating the Patient Story into Action” is the perfect place to start! Hosted by the Society for Participatory Medicine, this webinar features a few different perspectives on raising your voice in the healthcare space. I was honored to be included and really…Read More
2018 Exciting Update: Advancing Novel Treatment Options for Narcolepsy
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…Read More
Rising Voices of Narcolepsy 2018 Program is Now Accepting Applications!
“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…Read More
New Research for Breastfeeding Mothers with Narcolepsy
Guest Contributors: Emily Barker, Ph.D. and Katherine Sharkey, M.D., Ph.D. New research published in the journal Sleep Medicine suggests that lactating women who take Xyrem (sodium oxybate) to treat narcolepsy with cataplexy can time their breastfeeding to avoid exposing nursing infants to elevated levels of the drug in milk (Barker et al., 2017). Data from…Read More
Raising Narcolepsy Awareness in Italy!
On Saturday Sept. 24, 2016, I stood outside the fancy lecture hall at the University of Bologna in Italy, fidgeting with nerves. I picked up my headset for the “live translation” system that would be my lifeline for the day. Traveling to Italy to speak at the 20th Anniversary of AIN (Associazione Italiana Narcolettici e…Read More
Narcolepsy e-Patient Keynote to over 1,000 Healthcare Leaders at Health:Further Summit
I’m so honored to be a keynote speaker at Health:Further Summit in Nashville, TN on August 23-24, where I’ll join the stage with industry leaders to talk innovation and advanced solutions for the biggest issues facing healthcare. For this audience of healthcare executives and innovators, I’ll debut a new speech called, In Sickness or Health? Breaking Down Barriers…Read More