Narcolepsy
Launching 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 MoreWatch Video: Taking on #ALS #IceBucketChallenge
Tonight, I took on the ALS Ice Bucket Challenge. I was excited to participate in this viral awareness and fundraising campaign, as my Uncle Bill died of ALS and his courage inspires me every day as a narcolepsy advocate. I got the idea of taking the Ice Bucket Challenge in the scenic Griffith Park, during one…
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…
Read MorePreparing TED-style Talk for “Radical Thinkers”
On Sept. 11, 2014, I will present a TED-style talk at “Disruptive Innovations” in Boston, MA. My 12-minute speech will discuss: “How a Patient Helped Define a New Clinical Endpoint in Narcolepsy: Diagnosed with narcolepsy with cataplexy in 2007, award-winning author and founder of Project Sleep, Julie Flygare, shares her story on how she helped define a…
Read MoreNarcolepsy Finding Retracted but Autoimmune Theory and Epidemiological Association to Influenza/H1N1 Vaccine Remain Strong
Recently, Science reported that Science Translational Medicine (STM), retracted an important study in their December 18, 2013 journal by Dr. Emmanuel Mignot of Stanford that explained the first steps in our understanding of narcolepsy as an autoimmune disorder. In his study, Dr. Mignot had found that T cells were primed to attack hypocretin. Hypocretin are the brain…
Read MorePatient Advocacy at Public Relations & Communications Summit 2014
After my book-signing event in NYC, I shared my patient leader perspective at the Public Relations and Communications Summit in New Jersey on July 14, 2014. Our patient panel was led by Bob Brooks of WEGO Health and I was honored to share the stage with Michael Fernandez, an inspiring award-winning Migraine Health Activist and author of migrainediscussions.com. While…
Read MoreJoin Us! Sleep Walk Tampa Bay
In one month, on Sunday August 31, 2014, we will be walking on the beach to celebrate sleep in St. Pete Beach, FL! Please join myself and local host, Jessica starting at 9:00 a.m. for a 1.5 mile scenic beach walk and sleep spirit contest. Order event t-shirts by August 12, 2014. Join Project Sleep to celebrate…
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