Narcolepsy
Narcolepsy Presentation at Current Concepts in Sleep Conference 2014
I’m honored to be a featured speaker at the upcoming Current Concepts in Sleep Conference in St. Pete Beach, FL on August 29-30, 2014. I will be sharing my inspirational narcolepsy presentation – from collapsing to the ground to becoming a vocal advocate. The Current Concepts in Sleep Conference will take place at the picturesque TradeWinds Resort. The agenda features…
Read MoreHappy 1st Birthday, NARCOLEPSY: NOT ALONE!
On July 24, 2013, I launched the NARCOLEPSY: NOT ALONE campaign, unsure if anyone would join me. One year later, I can hardly believe the positive energy and enthusiasm supporting the campaign around the world. You’ve touched my heart beyond words, bringing countless smiles to my face and also tears of connection and joy. As…
Read MoreProject Sleep is officially a 501c3 non-profit!
Project Sleep is officially a 501(c)(3) tax exempt non-profit organization – which means that all generous donations are now tax-deductible! My heart jumped out of my chest when I received the news. I read the official IRS determination letter about 20 times to make sure I wasn’t dreaming. I could hardly believe it, my long-time…
Read MoreNarcolepsy Book Signing Event in NYC – Recap & Photos
“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not…
Read MoreHonda will create narcolepsy PSA with community
EXCITING UPDATE: Honda will create a 30-second Narcolepsy Awareness Public Service Announcement (PSA). I am beyond honored to serve as the spokesperson/talent in PSA and I’m currently working with Honda’s ad agency to develop the content. This is an incredible turn-of-events in our inspiring community initiative thanks to each and every person who signed the petition and raised your voice. Big thanks to…
Read MoreTaking a Drug Holiday – Guest Post by Nikki
NIKKI’S GUEST POST: Today was a drug holiday… Enough said. It’s always weird to take one for me. I always forget what it’s like. I don’t want to think about how many naps I had and the things I had hoped to get done. It’s interesting how some people see a nap as a treat…
Read MoreNARCOLEPSY: NOT ALONE in UK Newspaper featuring April Scarlett Lee’s story & artwork
“Despite dealing with the nightmares caused by her condition, April Scarlett Lee’s cartoons have gone global as part of Project Sleep!” April-Scarlett Lee’s narcolepsy journey and the NARCOLEPSY: NOT ALONE campaign are featured in the news this week! Read “Tackling Narcolepsy” by Lydia Johnson, Worcester News, July 7, 2014 [PDF]. I’m so proud to call…
Read MoreMeet a Superstar: BMX Track Racing with Narcolepsy
Meet Xander, a 4-year-old superstar with narcolepsy living in Canada. Xander has big bike racing dreams and isn’t letting his narcolepsy slow him down. Watch Xander fly by in this video: This was Xander’s first Bmx Bootcamp for the season. Bmx track racing is a form of off-road bicycle racing, derived from motocross racing. I…
Read MoreNarcolepsy – Am I Sick or Healthy?
If sickness and health are two opposite ends of the spectrum, then where do I fit in? The other day, I battled excruciating eye-burning sleepiness that felt like pure torture/hell. That same day, I also ran 3 beautiful miles in the golden California sunshine. Am I the sickest healthy person you know or the healthiest…
Read MoreHonda Issues Apology to Narcolepsy Community and Pulls Ad
WE DID IT! Thank you for supporting the petition asking Honda to remove the inaccurate “Synth and Seattleites” ad stating people with narcolepsy shouldn’t drive and to dedicate resources toward truthful awareness. We collected over 2,100 signatures in 36 hours! Late last night, we saw our first sign of response. The ad’s YouTube video (http://youtu.be/rC-zopOGVOI) became PRIVATE so…
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