Sleep nonprofit
Sleep Advocacy & Narcolepsy Awareness in Washington DC
“One day you finally knew what you had to do, and began…” — Mary Oliver, The Journey Ten years ago, I ended my silence. I started writing a memoir about narcolepsy and moved to DC to begin advocating. The last decade has been a whirlwind, the lowest of lows and highest of highs, and all…
Read MoreOne Year Ago: Living the Fullest Expression of My Dreams
One year ago, I texted my best friend: “I’m going to quit my job now. Please don’t let me become homeless.” She reassured me I’d be okay. So, I stepped into my boss’ office with legs shaking, and jumped out into the most surreal section of my professional life. Feb 12th will officially mark one…
Read MoreThe 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 More2018: A Groundbreaking Year for Narcolepsy Research & Drug Development
“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…
Read More2018: My Year in Review
2018 was a year unlike any other. I invested in a few new suitcases, which helped me get around easier since I don’t think I’ve ever traveled so much in one year. Here are some highlights, challenges, favorite reads, lessons learned and dreams for the new year! Highlights of 2018: Taking the leap to become the…
Read MoreReporting Back from the International Symposium on Narcolepsy
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…
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 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 MoreHave You Told Your Members of Congress About Narcolepsy?
I have a confession. I realized recently, “OMG, I haven’t told my Members of Congress that I have narcolepsy!!” While I consider myself a vocal advocate, I haven’t informed my legislators that I CARE about narcolepsy and sleep research and they should too. So, I’m excited to share that I will be going to Capitol Hill…
Read MoreUp/Lifted Podcast Featuring Narcolepsy
I’m honored to be the first female guest on the Up/Lifted Podcast this week! Up/Lifted is a cool new podcast hosted by Arin Gragossian about “personal history, pivotal moments, & honest stories. And sometimes lifting massive amounts of weight.” On this show, Arin and I did NOT lift weights, but talked living with invisible chronic health conditions, narcolepsy, Project…
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