Posts Tagged ‘Narcolepsy’
Filming 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 MoreViral Narcolepsy with Cataplexy Video
A video of a young woman with narcolepsy and cataplexy has gone viral. Watch below or on YouTube. This is a powerful video and I am grateful to Sarah Elizabeth for bravely sharing her experience! Sarah Elizabeth is primarily experiencing a narcolepsy symptom called cataplexy here. Cataplexy is a sudden loss of muscle tone, resulting in…
Read MoreWhat does NARCOLEPSY: NOT ALONE mean to you?
What resonates with you? I created this word-collage using popular words from NARCOLEPSY: NOT ALONE campaign blog posts. For me, the words “connect”, “badass” and “tears” stand out. I love that positive and negative experiences are captured here. No matter where you are on your journey, your feelings are valid and normal, its all part of the narcolepsy roller-coaster.…
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…
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…
Read MoreNARCOLEPSY: NOT ALONE Visits the Dominican Republic
Last week, I traveled to the Dominican Republic on vacation with my boyfriend. Knowing the Dominican Republic was not yet included in the NARCOLEPSY: NOT ALONE campaign, I was SO excited to personally add the 38th country to our amazing international photo series. In a rush to pack, I forgot my NARCOLEPSY: NOT ALONE paper…
Read MoreNarcolepsy on The Doctors Show
On Thursday, May 22, 2014, narcolepsy will be featured on The Doctors Show. Please check for local listings here. As a narcolepsy spokesperson and author of Wide Awake and Dreaming: A Memoir of Narcolepsy, I’m so thrilled that the Doctors Show will highlight narcolepsy on TV. Thank you to my brave and beautiful friend and co-advocate,…
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