Project Sleep
Unveiling the new NARCOLEPSY: NOT ALONE website!
I’m so excited to share Project Sleep’s new NARCOLEPSY: NOT ALONE™ campaign website at: www.narcolepsynotalone.com. When I started this campaign last year, I never imagined it would become such an empowering international movement. Now, NARCOLEPSY: NOT ALONE™ is the world’s largest social media narcolepsy awareness campaign – setting a bold new precedent that narcolepsy is not a joke, but a real disorder…
Read MoreFilming the Honda Narcolepsy PSA
Over the past few months, I’ve worked with Honda and a Honda agency, RPA, to create a narcolepsy public service announcement (PSA). I’m so proud and honored to have served as a real face and voice of narcolepsy for this project. In preparation, I shared my memoir, fact sheets, patient experience and key awareness points. It…
Read MoreWatch: Disruptive Innovations Interview on Narcolepsy, FDA & Project Sleep
I’m thrilled to share my Disruptive Innovations interview with the Conference Forum’s Exec. Director, Valerie Bowling. This fun discussion on narcolepsy, FDA and Project Sleep was filmed before my speech at the TCF’s Disruptive Innovations Conference in Boston, MA on Sept. 11, 2014. Thank you so much to Valerie and the Conference Forum’s team for…
Read MoreBringing the Patient Voice to Disruptive Innovations Conference
This week, I flew to Boston to speak at the Disruptive Innovations conference. My 15-minute TED-style talk was titled “How a Patient Helped to Define a New Clinical Endpoint in Narcolepsy”. Over the past few months, I researched and drafted my presentation and delivered two practice versions for my Toastmasters club. Knowing I was the “patient presenter”…
Read MoreSpeaking at Current Concepts in Sleep Conference
Over Labor Day weekend, I traveled to Tampa Bay, Florida to speak at the Current Concepts in Sleep Conference. Seeing tears in people’s eyes, I knew I’d opened their hearts to the REAL narcolepsy. It was an honor to present my journey to sleep doctors and technicians. Throughout the conference, Project Sleep was well-represented! Sleep…
Read MoreLaunching Project Sleep’s New Website
This week, we launched Project Sleep‘s new website! We’ve created a bright site to match our vision for a brighter future. This will be our launching pad to showcase and expand our efforts. A few fun pages to explore: “How I Am Curing My Sleep Disorder” Guest Post by Stacy Simera Host a NARCOLEPSY: NOT ALONE event! SLEEP WALK TAMPA…
Read MoreCongratulations Winners: Narcolepsy Awareness Giveaway!
Thank you to everyone who submitted new NARCOLEPSY: NOT ALONE photos during the First Birthday Giveaway Contest! I finally just drew the winners: Rayanne in the UK Kellie in Florida Suzy in Australia Congratulations! I will mail your prize-packs this week with over $60 worth of narcolepsy awareness gear including: 2 new infographic posters (one for you and…
Read MoreRead My HuffPost Article: “I’m Not Looking To Be Saved From Narcolepsy”
Check out my provocative HuffPost article: “I’m Not Looking To Be Saved”! It’s a dream come true to write on HuffPost, adapting this post from my blog. I can’t wait to raise more awareness via this popular website. Please like and share. Also, check out “Tweeting My Way Through Narcolepsy” on HuffPost by the amazing…
Read MoreNarcolepsy Keynote Speaker in Australia!
Australia, here I come! I’m beyond honored and thrilled to announce that I will be a keynote speaker for the First Patient Conference hosted by Narcolepsy Support Australia on the Gold Coast in Queensland on May 1-3, 2015. Narcolepsy Expert Extraordinaire, Dr. Emmanuel Mignot is the other confirmed keynote speaker! In addition, I will present sessions on…
Read MoreSupporting a Friend With Narcolepsy
If your friend or loved one was diagnosed with narcolepsy, you may wonder the best way show support. You want to help your friend through this difficult time, but it can be hard to know what to say or do. While there are no set rules for supporting a friend with narcolepsy, I hope these…
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