Narcolepsy
The Doctors Show Features My Story with Narcolepsy
Tune in to the Doctors TV Show this Monday Feb. 9, I’ll be sharing my journey with narcolepsy – including sleepiness, cataplexy, sleep paralysis and hypnagogic hallucinations . See full information here. Watch TV interview online: Crafting an honest and accurate portrayal of narcolepsy with the Doctors TV Show was a lot of fun. I was blown away…
Read MoreNARCOLEPSY: NOT ALONE Reaches Everest Base Camp
Please welcome GRACE to the NARCOLEPSY: NOT ALONE campaign, who took this photo at the Everest Base Camp in Nepal. In her inspiring blog post, she describes her journey as a woman with narcolepsy with cataplexy to reach the Everest Base Camp: “On paper you might think that a person with a diagnosis of Narcolepsy attempting to trek to…
Read MoreRunning a Marathon for Narcolepsy Scholarship
It’s official! I’m training to run the San Diego Rock n’ Roll Marathon on May 31, 2015 to support the Jack & Julie Narcolepsy Scholarship. Please consider supporting in one of two ways: Purchase a NARCOLEPSY: NOT ALONE t-shirt or sweatshirt here. Deadline: Feb. 15. Delivered in time to wear for National Narcolepsy Day/Suddenly Sleepy Saturday March 7,…
Read MoreMeet Collin and Conner – An Amazing Friendship
Meet Collin and Conner, two friends in the 5th grade in Columbus, Mississippi. I’ve always loved thier NARCOLEPSY: NOT ALONE photo, but recently learned about the friendship behind the smiles. Collin was diagnosed with narcolepsy with cataplexy at age 8. Despite the challenges he faces, Collin has stayed active as a student and athlete. He…
Read MoreA Day In The Life… NPR Features Narcolepsy
I’m thrilled that NPR station WHYY featured my story of narcolepsy on the radio today. Listen online here: “A Day In The Life of a Narcoleptic” by Steven Jackson. When the reporter for NPR asked to follow me around for 24 hours, I said “YES!” right away. I’m always looking to raise awareness about narcolepsy. I am…
Read More5th Grader Raises Narcolepsy Awareness at School
This past year has been very tough for Daishia, age 11, who was recently diagnosed with narcolepsy with cataplexy. In addition to narcolepsy, she is also dealing with a seizure disorder, migraines and obstructive and central sleep apnea. “I wish I could take all her pain and struggles away and make things easier for her,” describes her…
Read MorePatients Included: Narcolepsy Patient Voice in American Journal of Medicine
The patient’s voice is rarely included in medical journals, but luckily, I love breaking down superficial barriers between patients and medical professionals. Check out: “Narcolepsy: Let the Patient’s Voice Awaken Us”, by Julie Flygare, JD and Sairam Parthasarathy, MD, (American Journal of Medicine, January 2015). I feel so lucky to have collaborated with Dr. Parthasarathy on this project, he’s a doctor…
Read MoreDental Considerations with Narcolepsy: Guest Post by Heather Dudeck
My name is Heather Dudeck, PWN Supporter of my husband Mitch and registered Dental Hygienist in Indiana. I’ve been in the dental field for nearly seven years; three as a dental hygienist and the first four as a dental assistant. I was asked quite a few questions about oral health at the Denver Narcolepsy Network…
Read MoreA Wicked Awesome Moment
London 2007 F*CK, I slept through Wicked. In February 2007, I was in London for spring break and splurged on an overpriced “half-price” ticket to see my favorite musical, Wicked. I’d listened to the soundtrack a hundred times, but never seen it. The first act was magical, but as the curtains raised for the second…
Read MoreWhy I Love the Jack & Julie Narcolepsy Scholarship
I’m thrilled to share that Project Sleep unveiled the Jack & Julie Narcolepsy Scholarship 2015 to support students with narcolepsy while also fostering awareness of this often misunderstood disorder in high school and collegiate settings. This spring, three high school seniors will be awarded $1,000 toward their college education. Please read FULL application for details. Last year,…
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