Narcolepsy Advocate
“Ask Us Anything!” with Dr. Mignot, Julie Flygare and Watson
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…
Read MoreUpcoming Webinar: Translating the Patient Story into Action
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…
Read MoreWATCH NOW: Is it Narcoleptics or People with Narcolepsy?
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.…
Read MoreWhat Inspired YOU to Start Giving? Featured in #WomenWhoGive Series
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…
Read MoreRising 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 MoreSpeaking at the Sweet Dreams and Nightmares Sleep Symposium in Tallahassee
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…
Read MoreTaiwan Joins Narcolepsy: Not Alone campaign!!
Over the winter holidays, I was thrilled to visit Taiwan and meet with a leading Taiwanese narcolepsy researcher and clinician, Dr. Yu-Shu Huang. I was in Taiwan for an amazing ten-day vacation with my brother, sister-in-law and niece. After a long sleepless journey to Taiwan, I was so glad that we arrived in Taipei at their nighttime, so…
Read MoreToday: Please Ask Your Representative to Co-Sign Narcolepsy Research Letter
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…
Read MoreJumping Into a New Chapter of My Journey
Hi friends! I’m so beyond excited to share that as of February 12, 2018, I made a huge career change and took on a new role as President & Chief Executive Officer (CEO) of Project Sleep! Read the full announcement here. Wait, what’s the difference? Some people have said they thought I was already serving in this…
Read MoreThe Daze Before the Dream
This isn’t your average nap. Living with narcolepsy, my brain demands to go into R.E.M./dream sleep during the day. Pressure builds and I know it’s THAT time for my brain to do its thing. I get up from my cubicle & head out to my car, hoping not to run into anyone I know along…
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