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New Animal Planet Show Seeking PWNs

A new Animal Planet show called, “Rescue Dog to Super Dog” (working title), will give homeless dogs a second chance at life as they are rehomed with […]

The Narcolepsy Education Toolbox

We are excited to present the Narcolepsy Education Toolbox with the partnership of Global Genes, a leading rare disease advocacy organization.  Read, download, print, and distribute any […]

Help Researchers Learn More About Narcolepsy

The Nexus Narcolepsy Registry is an effort by the narcolepsy research and advocacy communities in collaboration with Jazz Pharmaceuticals that will collect de-identified data from a large […]

Self-Management Techniques for Excessive Daytime Sleepiness

Check out this study published in the Journal of Sleep Disorders & Therapy. It is based on a survey that was developed by Lois E. Krahn and […]

Upcoming support group meetings

Having the support of other people with narcolepsy is an important part of living well with narcolepsy. One of the best ways to get this support is […]

Tips to make the back-to-school transition easier

  For tips on staying organized this school year, visit our blog.

Looking for the Epworth Sleepiness Scale mentioned in “Annie’s Mailbox”? Find it here!

The nationally syndicated advice column, “Annie’s Mailbox” includes a response about narcolepsy on July 30, 2o15. It suggested taking the Epworth Sleepiness Scale to asses your own, or a […]

New research offers insights into the cause of narcolepsy

An international team of researchers led by Lawrence Steinman, MD, of Stanford University, has found some of the first solid evidence that narcolepsy may be a so-called […]

Volunteers needed for program that helps medical students learn about rare diseases

The David R. Cox Prize for Compassion, presented by the Student Advocates for Neglected Diseases (STAND) with support from Global Genes, recognizes student doctors who have identified […]

Participants needed for research study for children with narcolepsy with cataplexy

Researchers are currently conducting the EXPRESS medical research study of an investigational medication called Xyrem. They want to evaluate the safety and effectiveness of this medication in […]

Narcolepsy Network’s statement on “The Simpsons” upcoming narcolepsy storyline

Narcolepsy Network’s statement on “The Simpsons” upcoming narcolepsy storyline from Executive Director Eveline Honig, MD, MPH: Narcolepsy is a real, debilitating disorder for which there is no […]

New York City walkers DREAM BIG!

Walkers of every kind gathered in New York City on May 16 for the third annual DREAM BIG! Walk for Narcolepsy Network. From power walkers to leisure […]

Summer camp for kids with narcolepsy

Kids with narcolepsy are invited to attend summer camp at the Center for Courageous Kids (CCK) camp in Scottsville, KY, June 23-28, 2015.  Campers are invited to join other kids […]

Narcolepsy researcher named a top stem cell scientist

Florian Merkle, PhD, is one of five scientists the University of Southern California calls “the next generation of top stem cell scientists.” Merkle and his counterparts recently […]

New research provides more evidence that narcolepsy is an autoimmune disorder

New research published in the journal “Pharmacological Research” shows that a particular autoimmune process triggers the loss of orexin neurons in people with narcolepsy. Researchers at Tel […]

Narcolepsy Network remembers Oleta Elliott

Narcolepsy Network mourns the loss of Oleta Elliott, who passed away on March 13 in Arizona following a long battle with cancer. She was 68 years old. […]

NN supporter Rubin Naiman interviewed by Arianna Huffington

Narcolepsy Network friend and supporter Dr. Rubin Naiman was recently interviewed by Arianna Huffington.  Their conversation about the importance of dreams appears in the Huffington Post. Read […]

Narcolepsy Bed Race gives new meaning to “fast asleep”

The third annual Narcolepsy Bed Race in Roanoke, Virginia, was anything but sleepy.   The weather was beautiful, the teams were fast and determined and the crowd of […]

Narcolepsy Network premiers new informational video on Suddenly Sleepy Saturday

March 7 is Suddenly Sleepy Saturday, a day for narcolepsy awareness.  To help raise awareness, Narcolepsy Network has created this informational video. Please watch to learn more […]

NN Blog: Getting Organized

So it’s the first month of 2015 and like a lot of people, I’ve been making some resolutions. One of the things I’m trying to work on […]

Neuro Film Festival competition offers PWNs a chance to share their story

The American Brain Foundation is looking for short, compelling videos about living with narcolepsy or other neurological disorders for its Neuro Film Festival.  The festival’s goal is to raise […]

Participants needed for a study on Xyrem for children

Researchers in Oceanside and Orange, California, are looking for children with narcolepsy with cataplexy to participate in a research study.  The study will assess the effectiveness and safety of […]

NN sponsors retreat for kids with narcolepsy and their families

Narcolepsy Network has partnered with The Center for Courageous Kids to offer a weekend retreat for kids with narcolepsy and their families.  The retreat will be held April […]

Narcolepsy Network announces 2014 award recipients

Narcolepsy Network’s annual awards recognize those who have made significant contributions to the narcolepsy community.  The recipients received their awards at our annual conference, held October 17-19, […]

Narcolepsy Community Turns a Punch Line into an Opportunity for Awareness

Narcolepsy Network (NN) and the entire narcolepsy community have long worked to dispel myths and misunderstanding about narcolepsy. When Honda Motor Company released a TV commercial using […]

Attend Rare Diseases Week in D.C. with a travel scholarship

Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases, is set to host another full week of activities on Capitol Hill the week of […]

Petition seeks to add narcolepsy to SSDI “Blue Book”

Add your name to a petition asking that narcolepsy be added to the Social Security Disability Insurance (SSDI) “Blue Book.”  The blue book, officially called Disability Evaluation […]

LPGA golfer Nicole Jeray raises narcolepsy funds and awareness

The 2014 LPGA season is underway and pro golfer and PWN Nicole Jeray is raising narcolepsy awareness and funds for narcolepsy organizations including Narcolepsy Network with her […]

NN Blog — Back to School

September 10, 2014 — Back to School By Melissa Patterson Outreach Coordinator On a recent visit home, my mother was in a cleaning mood and she promptly […]

Boston-area research study seeks children with narcolepsy

Children with narcolepsy wanted for research study on obesity. Help us study why children with narcolepsy often become overweight. Research doctors at Boston Children’s Hospital seek children with narcolepsy […]

FDA report on narcolepsy public meeting is released

The U.S. Food and Drug administration (FDA) has released its final report on the public meeting on narcolepsy.  “The Voice of the Patient” summarizes comments and themes […]

NN Blog – Dear Honda: Narcolepsy Isn’t Funny

Dear Honda: Narcolepsy Isn’t Funny By Melissa Patterson Narcolepsy Network Outreach Coordinator posted June 24, 2014 To those of us with narcolepsy, it pretty much goes without saying […]

Honda apologizes to the narcolepsy community for offensive ad

Representatives from Honda have contacted Narcolepsy Network to apologize for the “Synth and Seattlites” ad for the Honda Fit.  They have confirmed that the ad has been […]

Tell Honda that narcolepsy is not a joke

On June 19, Honda released a new ad for its Honda Fit automobile.  In the ad, titled “Synth and Seattleites,”  a person who says he has narcolepsy fall asleep […]

NN presents two posters at SLEEP 2014 meeting

Narcolepsy Network (NN) made two poster presentations at the SLEEP 2014 meeting in Minneapolis.  Both posters were authored by Mark Patterson, MD, PhD, co-vice president of  NN’s Board of […]

The DREAM BIGGER! Narcolepsy Walkathon 2014 a huge success!

More than 145 walkers (not counting babies and puppies!) gathered at Pier 46 in New York City’s Hudson River Park on April 26 to raise narcolepsy awareness […]

Narcolepsy Bed Race raises awareness in Virginia

The second annual Narcolepsy Bed Race, organized by NN board member Dr. Mark Patterson, took place in Roanoke, VA on Suddenly Sleepy Saturday. Building on the success […]

People with narcolepsy profiled in “The Atlantic” magazine

The current The Atlantic magazine includes the article “Portraits of Narcolepsy in New York City,” which offers a look into the lives of five New Yorkers with […]

AAHD offers scholarships to students with disabilities

The American Association on Health and Disability (AAHD) is now accepting application for the Frederick J. Krause Scholarship on Health and Disability.  The scholarship is awarded annually […]

New support group forming in Rhode Island

People with narcolepsy, family, friends and other supporters are invited to the Rhode Island Narcolepsy Support Group meeting.  Join us for conversation and support as we share our […]

Conference scholarship applications are now available

Narcolepsy Network offers financial assistance to people who would otherwise be unable to attend the NN conference due to financial restrictions.  Scholarship awards are made possible by […]

Research shows that a micropump may help eliminate middle-of-the-night medication doses

Researchers at Flamel Technologies are researching use of a micropump to deliver Sodium Oxybate. Recent clinical trials show that the pump has the potential to eliminate the […]

“Neurology Now” magazine features PWN Nicole Jeray

The April/May 2014 issue of “Neurology Now” magazine features an interview with Nicole Jeray.  Nicole is a person with narcolepsy (PWN), an LPGA golfer and outstanding narcolepsy […]

Conference scholarship fundraiser exceeds goal

Our conference scholarship fundraising campaign, held during the month of March, has exceeded its goal, raising more than $11,000. Thank you to all the generous donors! Proceeds […]

Jazz Pharmaceuticals acquires investigational medication for EDS

Jazz Pharmaceuticals has acquired rights to ADX-N05 from Aerial BioPharma, LLC.  ADX-N05 is a novel compound in clinical development for the treatment of excessive daytime sleepiness in patients with […]

Orexin nasal spray shows promise as a treatment for narcolepsy

New research shows that an orexin nasal spray holds promise as a treatment for the sleep alterations and EDS that are common symptoms of narcolepsy.  The study, […]

New research links narcolepsy with cataplexy to a genetic variant

New research in Europe shows that almost 100% of study subjects who had a particular variation in the HLA-DQB1 gene had narcolepsy with cataplexy.  The findings are […]

New study may show the cause of H1N1-triggered narcolepsy

A new study from Stanford University School of Medicine shows that in genetically susceptible people, narcolepsy can sometimes be triggered by a similarity between a protein called […]

Pediatric narcolepsy study in Texas needs participants

Do you have a child between 7-17 years old, diagnosed with narcolepsy who had a recent experience of cataplexy attack (within the last 2 months) and had a […]

Children needed for Boston-area narcolepsy study

Children with narcolepsy wanted in the Boston area for research study on obesity: Help us understand why children with narcolepsy often become overweight.  Research doctors at Boston Children’s Hospital […]

Canadian TV program explores rise in childhood narcolepsy cases

The CTV program W5 aired a report exploring the reasons behind a recent increase in the number of cases of childhood narcolepsy reported in Canada. The November […]

Video of the FDA meeting on narcolepsy available online

Those who missed the historic FDA meeting on narcolepsy still have a chance to see this historic event. The FDA has made video of the web broadcast […]

Narcolepsy community shines at FDA public meeting

Representatives from Narcolepsy Network joined hundreds of others from the narcolepsy community at the FDA’s public meeting on narcolepsy drug development on September 24.  Approximately 150 people […]

New research links histamine to narcolepsy

Two newly published research studies show that histamine-producing neurons in the brain may play a role in narcolepsy. One study is by Thomas Scammell, MD, professor of Neurology at […]

Patients’ Journey to a Narcolepsy Diagnosis

A poster presentation by Lawrence P. Cater, PhD, Christine Acebo, PhD, and Ann Y. Kim, MA, of Jazz Pharmaceuticals provides insights into how people with narcolepsy are […]

Narcolepsy Network mourns the passing of Sharon Smith

Dear Friends, It is with great sadness that we share with you the news that Sharon Smith, past president of Narcolepsy Network (NN), has passed away. She […]

Narcolepsy researcher Dr. Emmanuel Mignot honored by National Academy of Sciences

Emmanuel Mignot, MD, PhD, the chair of Narcolepsy Network’s Medical Advisory Board, has been named as a new member of the National Academy of Sciences. The academy is […]

NYC DREAM BIG! Narcolepsy Walkathon raises more than $6,500

Narcolepsy Network supporters gathered at Chelsea Waterside Park in New York City on April 27 to raise awareness of narcolepsy and money for NN.  More than 130 […]

NY Times: Could what looks like A.D.H.D. be a sleep disorder in disguise?

From the New York Times: Diagnosing the Wrong Deficit Could what looks like A.D.H.D. be a sleep disorder in disguise?   In an Opinion piece published in on […]

Narcolepsy selected for FDA’s Patient-Focused Drug Development Initiative

The Food and Drug Administration (FDA) has announced the selection of 20 disease areas to be addressed during the first three years of its Patient-Focused Drug Development […]

We mourn the loss of Board Member and Co-Founder Sheryll Sue Carella

Sheryll Sue Carella 6/5/36 – 4/2/13 Sue was born in Iowa but grew up in San Bruno, CA.  She was a graduate of Capachino High School, San […]

Thank you to the NYC DREAM BIG! Narcolepsy Walkathon sponsors

Thank you to the following companies and individuals who are generously supporting this year’s DREAM BIG! Narcolepsy Walkathon, April 27  in New York City. Visit the Walkathon […]

Save the date for our 2013 conference

Make plans to meet us in Atlanta! Narcolepsy Network’s 2013 conference will be held at the InterContinental Hotel Buckhead in Atlanta, Georgia, October 18-20.  More information will be available […]

Wall Street Journal: More Children With Sleep Problems Seek Overnight Tests

As more research spotlights the damaging effects of a poor night’s sleep on children, a growing number of kids are undergoing overnight sleep studies to diagnose sleep disorder […]

Experts discuss the relationship between sleep and memory

On the February 8 edition of National Public Radio’s “Talk of the Nation,” a panel of experts discussed the link between sleep, memory and cognition. As people […]

Columbia Journalism Review says Reuters’s description of narcolepsy is excessively bleak

In an article titled “Life after Pandemrix,” reporter Sara Morrison says that Reuters’s description of narcolepsy is excessively bleak.  The description appears in Reuter’s reporting on research showing a link […]

Evidence grows for narcolepsy link to GSK swine flu shot

(Reuters) – Emelie Olsson is plagued by hallucinations and nightmares. When she wakes up, she’s often paralyzed, unable to breathe properly or call for help. During the […]

Students “Dream Big” for Narcolepsy Network

Students at Oklahoma State University, led by Kevin Gonzales and Megan Phillips, are bringing their big dreams to life with a concert to raise money for Narcolepsy Network. […]

Virginia supporters find way to stay in bed, have fun and raise money at the same time

On Saturday, March 9, a group of supporters in Roanoke, Virginia will raise money for Narcolepsy Network with a Bed Race.  Teams of five people each will […]

Golfer Nicole Jeray’s birdies benefit narcolepsy as “Swinging for Sleep” raises more than $35,000

Narcolepsy Network thanks LPGA golfer Nicole Jeray for her Swinging for Sleep campaign, which raised more than $35,000 in 2012.  Through the campaign, Jazz Pharmaceuticals and individual […]

NIH awards grant to develop a new drug to treat narcolepsy

Reset Therapeutics, the leader in harnessing the power of the body’s internal clocks to develop therapeutics, has been awarded a five-year cooperative agreement by the National Institutes […]

Excessive daytime sleepiness resources now available online

The National Sleep Foundation’s new online Excessive Daytime Sleepiness resource center helps you understand a condition that is often widely misunderstood. Explore more 30 articles dedicated to explaining Excessive […]

Parents, caregivers and educators invited to learn more about Narcolepsy in the Classroom

The Narcolepsy & Hypersomnia Support Group of the Greater Washington D.C. Area presents Narcolepsy In The Classroom?, an informative afternoon for parents, caregivers and educators. Children and […]

“Wide Awake and Dreaming: A Memoir of Narcolepsy” now available

Julie Flygare was on an ambitious path to success, entering law school at age 22, when narcolepsy destroyed the neurological boundaries between dreaming and reality in her […]

Breakthrough research on hypersomnia published

Narcolepsy Network Medical Advisory Board member David Rye, MD, PhD, and a team of researchers at Emory University School of Medicine have discovered that dozens of adults with […]

Narcolepsy and Cataplexy Circuitry Becomes Clearer After a Decade of Research

At the American Neurological Association annual meeting in October,  Thomas Scammell, MD, a leading sleep researcher, reviewed advances in narcolepsy and cataplexy, focusing on new research and insights […]

Golfer Nicole Jeray Swings for Sleep

LPGA golfer Nicole Jeray raises both awareness and money for narcolepsy through her “Swinging for Sleep” program.  In the mid-90’s, Nicole Jeray’s professional golf career was just […]

Musician Macy Gray lends her voice to narcolepsy awareness

In an interview with Huffington Post Live, musician Macy Gray talks about narcolepsy.  She’s joined by narcolepsy researcher Dr. Emmanuel Mignot. Thank you Macy for helping to spread the […]

Researching Options in Pediatric Narcolepsy

NeuroTrials Research is conducting a new research study for excessive daytime sleepiness for children and teens with narcolepsy.  Qualified participants will be compensated for time and travel. Your […]

Congratulations to our 2012 award recipients!

Meet the seven inspiring individuals who were recognized with awards at our 2012 patient conference.

2012 Public Awareness Award Winners Featured on YouTube

Our 2012 Public Awareness Award recipients Katy Scruton and Robby Roden are featured in this YouTube by filmmaker Chris Handoyo.  In the short documentary Katy and Robby […]

Narcolepsy CareLine

Announcing a new program for narcolepsy patients! Narcolepsy patients have a new resource for navigating the world of employment and insurance issues. Patients can count on help with […]

New Survey Results Regarding Perception of Narcolepsy

“AWAKEN” Survey Finds Only 50 Percent of Americans Understand Significant Health Impact of Narcolepsy, and Many Physicians Not Comfortable Diagnosing the Sleep Disorder DUBLIN, June 11, 2012 […]

Celebrate #GivingTuesday on November 29

We will be celebrating #GivingTuesday, a day that encourages philanthropy and generosity worldwide, on November 29 following Thanksgiving and the widely recognized shopping events of Black Friday […]

Take Action to Support the 21st Century Cures Act

Global Genes, EveryLife Foundation, and  NORD are announcing a United Rare Disease Day of Action scheduled for Tuesday, November 15. On that day, email this alert link and […]

Thank You for Taking Our Online Survey!

Thank you for your feedback! Our survey is now closed. We will share overall results and next steps at our conference and online over the next month. […]

Keynote Speaker 2016

Dr. Judith Owens is Director of Sleep Medicine at Boston Children’s Hospital in Boston Massachusetts and Professor of Neurology at Harvard Medical School (pending). She is an […]

2016 Meetup Tour

Global Genes, Narcolepsy Network, and Wake Up Narcolepsy are excited to announce the 2016 Narcolepsy Meetup Tour! The tour consists of four regional meetings that give narcolepsy patients and […]

4th Annual Bed Race

We encouraged everyone to stay in bed on March 12 for  Suddenly Sleepy Saturday, but it had to have wheels! The Fourth Annual Narcolepsy Bed Race came to the […]

Suddenly Sleepy Saturday 2016

Suddenly Sleepy Saturday, also known as Narcolepsy Awareness Day, was held on March 12, 2016. Narcolepsy Network encouraged members and supporters to get involved by requesting a proclamation […]