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PWN in the News

People with Narcolepsy (PWN) in the News

7 Things Not to Say to Someone With Narcolepsy (and What to Say Instead)
In this article from Everyday Health, Narcolepsy Network and others weigh in on how to best communicate with those who have narcolepsy (published in February 2023) 

Board Member is Featured on a Video Series
Our Board Member, Dr. Luis Ortiz, is featured in a video series by Project Sleep. The video also features two other doctors who have narcolepsy. Watch the video here.

Narcolepsy Network’s Executive Director Featured on Radio Interview
Our Executive Director was interviewed on Handi-Link, a radio program that discusses disability issues. Listen to the interview here.

Narcolepsy Network’s Executive Director Featured on Radio Interview
Our Executive Director was featured on the “It Takes 2 with Amy & JJ” radio show. Take a listen here.

Advocate’s Rare Disease Week Experience Highlighted
One of our narcolepsy advocates shared his Rare Disease Week experience with his local paper, The Buffalo News.

Narcolepsy Advocate Featured in Local Paper
Board Member Cynthia Zorn was featured in the San Diego Union-Tribune as a Rare Disease Week Advocate.

New Hampshire declares March 9, 2019 as Suddenly Sleepy Saturday
PWN Kristen Crawford raised narcolepsy awareness by pushing New Hampshire officials to recognize Suddenly Sleepy Saturday. She used this opportunity to write about narcolepsy in the Union Leader.

One Young PWN is Spreading Awareness in his Local Town in Illinois
Dakota Meyer, from Papineau, IL, shares his story as a PWN and why he decided to take part in Suddenly Sleepy Saturday. Read the full story here.

Teen Working to Spread Awareness of Narcolepsy
Mackenzie Zorn, a Youth Ambassador, spreads awareness of narcolepsy, including to the mayor of San Diego. Read the full article here.

Board Member to Run Half Marathon to Raise Awareness
Board Member Mee Warren will be running in the Angkor Wat International Half Marathon to raise awareness of narcolepsy on December 4. Read more and support her here.

Youth Ambassador Highlights Her Story and Her Hope to Spread Awareness to Others
Merritt Artim shares her story of diagnosis and what she is doing to help others. The full story can be found here.

PWN Fights Against Employer Who Refused Accommodations
Amy Lynch, a PWN Austin Police Detective, was victorious in her lawsuit against the city and police department. The full story can be found here.

Board Member Sara Kowalczyk Presented a Poster at the SLEEP 2016 Meeting
Her research focused on the positive correlation between self-reported daytime sleepiness and attention problems for adult patients with narcolepsy and idiopathic hypersomnia. Read the abstract here.

Youth Ambassador Educates Her Community About Narcolepsy
A Youth Ambassador from Elizabeth City, NC helps to explain her diagnosis and why she feels it is important to educate others on this disorder. Click here to read the full article.

Rediscovering the Joy of Sleep
Rubin Naiman, Clinical Assistant Professor of Medicine, Center for Integrative Medicine from the University of Arizona, penned an essay for AEON, a British literary magazine, about the finding the joy in sleeping. Click here to read the essay.

Support Group Mourns Member
Joan Thonet Hall, age 97, passed away on April 10, 2016. Joan was a member of the Midwest Narcolepsy Support Group for the last 8 years; her son brought her every month until recently. She led an amazing life and narcolepsy was a part of it.  Her stories were often funny, sad, and entertaining. To read her full obituary and funeral information, go here.

How Does Narcolepsy and Cataplexy Affect Daily Life?
New York Magazine interviews one PWN to give some insight. Read the Q&A here.

Five Common Misconceptions People With Narcolepsy Hear takes on common misconceptions PWNs hear

Governor of Oregon Proclaims Suddenly Sleepy Saturday
A Springfield, Oregon man helped convince Gov. Kate Brown to proclaim March 12 as the first Suddenly Sleepy Saturday. Go here to learn more.

PWN Nicole Jeray is Highlighted in a Article
Professional golfer Nicole Jeray was featured in the New York Times.

Board Member Completed the NYC Marathon
Congrats to Keith, NN Board Member, for running in and completing the 2015 New York City Marathon!

The Atlantic Features Narcolepsy
Portraits of Narcolepsy in New York City Features Narcolepsy
I have narcolepsy, and I hate that people think I’m just lazy

Angie Collins Gives a TedX Talk about Narcolepsy
Purpose(fully) Living With Narcolepsy, TEDx Talks via YouTube

Ciro Di Ruocco Discusses Narcolepsy in The Navigator
Wide awake and sleeping: Discussing narcolepsy

The Atlanta Journal-Constitution Features PWN Danielle Brooks
Swimmer doesn’t let narcolepsy slow her down, The Atlanta Journal-Constitution

Miss Louisiana USA 2013 Kristen Girault Talks about Her Narcolepsy on Today
From cancer to narcolepsy, Miss USA contestants ‘inspired’ by health battles,

Julie Ann Fain
True Life: I Have Narcolepsy, MTV

Tracy Bonner (Olympic Synchronized Diver, author of “Athletics and Narcolepsy” and cast member of Cirque Du Soleil’s “O” in Las Vegas) Discussed Her Diagnosis with Narcolepsy
Awakened from a Nightmare: Diagnosed with narcolepsy, Tracy Bonner successfully fought a drug suspension

Muhammad Daud Documents Narcolepsy
Living With Cataplexy and Narcolepsy
My Day Out with Narcolepsy – Part 1, YouTube
My Day Out with Narcolepsy – Part 2, YouTube
My Day Out with Narcolepsy – Part 3, YouTube

Retired Nurse Receives Award for Raising Awareness
Waking up to Narcolepsy

Baltimore Ravens Rookie Has a Sleep Disorder
Ravens rookie suffers from sleep disorder

Narcolepsy Helps One PWNs with Art
Narcolepsy Helps Grace at Artexpress

PWN Explains What It’s Like to Have Narcolepsy
Asleep with the Enemy

PWN Tells Her Story of Narcolepsy
The mother who faints if she says: I love you

Newsweek Features Narcolepsy
The Big Sleep: Learning to live with narcolepsy

The Daily Mail Features Story of Young PWN
The seven-year-old boy with such severe narcolepsy that he couldn’t kick a ball without falling asleep