Rare Disease

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 […]

{ 0 comments }

“We are witnessing a revolution of our understanding of narcolepsy.” – Dr. Emmanuel Mignot, M.D. Ph.D., Director of the Center for Sleep Sciences and Medicine, Stanford University 2018 was an exciting year for narcolepsy research and drug development. Here’s my top six research highlights of 2018 that you should know about! 1. Narcolepsy & the […]

{ 0 comments }

Hollywood’s portrayals of narcolepsy are notoriously inaccurate. For one day, the script was different, thanks to Suffering the Silence, AwesomenessTV and Visible. I was so proud to represent narcolepsy in this cool new video! Watch Video: Hello Hollywood! The morning of the Suffering the Silence filming and photo shoot, I arrived at the fancy AwesomenessTV studio in […]

{ 0 comments }

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 […]

{ 0 comments }

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 […]

{ 0 comments }

“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 […]

{ 0 comments }

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 […]

{ 0 comments }

I’m so excited to share my Health:Further keynote presentation video. I delivered this speech to over 1,000 healthcare professionals in Nashville, TN last year. My speeches are rarely online – so be sure to check this out!  Watch video: I shared here how mad nervous I was for this speech, but I managed to pull it off! […]

{ 0 comments }

On Saturday, March 25, I was honored to give my narcolepsy presentation at Hoag Health’s Sleep Symposium in Irvine, CA. Because I work full-time with a long commute, I got home fairly late on Friday night and started counting backward from when I was supposed to be in Irvine on Saturday at 9:00 a.m. The […]

{ 0 comments }

One of the best parts of the Griffith Park Trial Marathon took place about 10 days BEFORE the race. Arriving home from work one night around 8:00 p.m., I was totally drained and wanted to call it a night, but I had to go running. Ugh. I’d run over 270 miles in four months, and only had […]

{ 1 comment }