narcolepsy resources
Supporting 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 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 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 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 MoreUnveiling Project Sleep’s Logo & Introductory Video
As founder of Project Sleep, I’m thrilled to unveil our beautiful new logo in this introductory video: Thank you for celebrating this exciting step forward with Project Sleep! Our new website is on its way soon along with other announcements and events. A big thank you to Alex Withrow for his amazing photography and video production. Please…
Read MoreWhy NARCOLEPSY: NOT ALONE Matters…
Why NARCOLEPSY: NOT ALONE matters: “You have touched my daughter in a way I don’t believe I could ever to make her feel. To see her excitement passing out the bracelets, sharing that she has narcolepsy and cataplexy and she’s PROUD, it’s such a great change for her.” -Karen, Kenya’s Mom “I just got my shirt in…
Read More“What is it like to have Narcolepsy?” Communication Tips
Narcolepsy is a neurological disorder of the sleep/wake cycle affecting 1 in every 2,000 people. As a person with narcolepsy, it can be overwhelming to explain the symptoms and affects on life. Typical Questions about Narcolepsy and Simple Answers: Provided by Julie Flygare’s Narcolepsy Mobile App – FREE download today! Q: What is narcolepsy?A: Narcolepsy is a neurological…
Read MoreMeet the Jack & Julie Narcolepsy Scholarship Award Recipients 2014
The Jack and Julie Narcolepsy Scholarship is delighted to announce that two recipients of the inaugural scholarship 2014 are Kendra Larrabee and Jacob Zeiher. We are thrilled to award both Kendra and Jacob a $1,000 scholarship toward their college education. The Jack & Julie Narcolepsy Scholarship is the first-ever scholarship supporting students with narcolepsy while also…
Read MoreSchool Accommodations for Narcolepsy
For an updated overview and new guidance from Project Sleep’s toolkit, see my 2025 post: School Accommodations for Narcolepsy. I compiled this list directly quoting people with narcolepsy and their family members who reported on accommodations received for narcolepsy during education (from grade school to graduate school). I’ve broken the accommodations into categories. Every student…
Read MoreGive the Gift of Narcolepsy Awareness: Purchase Signed Books
This holiday season, I’m excited to offer personalized signed copies of “Wide Awake and Dreaming: A Memoir of Narcolepsy” for a discount rate of $15 a book (plus shipping). Order by Dec. 10 to ensure Christmas delivery Bulk discounts on orders of 10 books or more To place your order, contact me at REMRunner01@gmail.com In…
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