Raising Awareness
What 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 MoreThe One Person You MUST Get on Your Team
I wish I had a magic potion to get everyone to understand narcolepsy. In my experience, a few friends and loved ones will understand right away, others may take their sweet time, and some will never get it. However, there is one person that you MUST get on your side: YO’SELF! It’s so cheesy and cliché,…
Read MoreUpcoming Narcolepsy Speaking Engagements: New York, Colorado and via Webcast!
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…
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 MoreNew 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 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 MoreLaunching Project Sleep’s #BeTheLight Campaign for #GivingTuesday and Holidays
Exciting news! I’m thrilled to share that Project Sleep just launched our #BeTheLight campaign in preparation for #GivingTuesday (Nov 28) and the holiday season. Project Sleep has a bold goal to raise $25,000 by December 31, 2017. The #BeTheLight campaign encourages supports to give $100 or raise $100 in support of the non-profit’s critical awareness…
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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