SUBSCRIBENews and Events
NN Sponsoring Summer Picnics
Summer is the time to get out into the great outdoors, and what better way to catch some fresh air and sun (or shade) than a picnic where you can meet and socialize with other members of the narcolepsy community? [...]
Narcolepsy Network Responds to NIH’s Call for Comments on Revision of Sleep Disorders Research Plan
Advocating on behalf of all people with narcolepsy, and in keeping with our mission to promote scientific research and early diagnosis, Narcolepsy Network submitted the following comments to the National Institutes of Health (NIH) in response to their June 9, 2010 notice, NOT-HL-11-107: Request for Information (RFI): Sleep Disorders Research Plan.
Continue Voting Each Day in JULY for Narcolepsy Research!
The Narcolepsy ImmunoChip Project climbed to 33rd place in June, thanks to widespread support from our community! This grant proposal is automatically carrying over to July for a second try. Volunteer coordinators learned a great deal in June about what it takes to win and now have a winning strategy in place. So, please continue to vote each and every day in July for Stanford’s Center for Narcolepsy to receive a $250,000 grant from Pepsi® to fund critical narcolepsy research. Only the 2 highest-voted grant applications will be awarded. We are a small community compared to some other groups in the running. To succeed we need 100% daily participation of our entire community and their family members, friends (aged 13+) and medical providers, so please reach out to enlist their help!
Vote for Narcolepsy today and every day in July and watch the ranking improve! July 23th ranking @ 10 am ET: 33/197
Article – Narcolepsy: Diagnosis and Treatment in the Elderly
In this NN exclusive narcolepsy expert Neil Feldman, MD spells out common factors to be considered in the treatment of narcolepsy in elderly patients.
School Nurses Learn About Narcolepsy
May 12, 2010 The Lancaster County School Nurses Association (Pennsylvania) invited me to speak at their annual dinner during the first week of May. This dinner was held in the Fireside Tavern at the Historic Strasburg Inn, set amidst the endless rolling hills of Amish Country. It was my honor to educate them about narcolepsy [...]
Running the Boston Marathon for Narcolepsy
In its recent press release Massachusetts-based Wake Up Narcolepsy (WUN) - a nonprofit whose mission is to raise both public awareness and funds for research and education - announced that for the first time ever narcolepsy was represented at the 114th Boston Marathon! The race took place on April 19th, 2010. The 4 runners, including Julie Flygare (see related article), and a parent [...]
Winning with Narcolepsy: Tour de Bretagne
In 2004 the International Cyclists’ Union (UCI) barred Frank Bouyer from competition when he tested positive for modafinil, which he was taking for treatment of narcolepsy. Six years and one medication change later Frank Bouyer has returned to cycling to win France’s Tour de Bretagne. Although the article does not identify the “new” medication, narcolepsy [...]
Boston Globe Interviews Julie Flygare
New England native Julie Flygare is not letting her narcolepsy-cataplexy keep her from realizing her dream of running the Boston Marathon on Monday, April 19 to raise awareness of narcolepsy. She’s been training for many months in preparation for Marathon Monday. Her efforts to promote local awareness have grabbed the attention of the Boston Globe. View the article.
Narcolepsy Network 25th Annual Patient Conference
Arlington, Virginia
Friday, October 8 – Sunday, October 10, 2010
NN Attends GASP
The Georgia Association of Sleep Professionals (GASP) gathered for their inaugural meeting in Atlanta, GA on March 13-14, 2010. NN Trustee Michele Profeta attended the conference as an exhibitor to enlighten the doctors and technicians about our mission of support, education, advocacy, and improved awareness of narcolepsy.
NIH Seeks Input on Sleep Disorders Research Plan by July 2, 2010
The National Institutes of Health (NIH) is accepting comments from the public prior to updating the existing Sleep Disorders Research Plan, which dates back to 2003. The revised plan, expected to be finalized in June 2011, will establish the priorities for funding of sleep disorders research through 2016 or until the next plan is approved. Narcolepsy Network encourages all individuals with or affected by narcolepsy to respond by the deadline, Friday, July 2, 2010. The strength of our community’s response will indicate to NIH our level of interest in and need for narcolepsy research to be included in the 2011 Sleep Disorders Research Plan. More…
Carnival Night a Success
Approximately 40 people gathered for an evening of fun, games and refreshments in celebration of Narcolepsy Awareness on March 11, 2010 at Carnival by Bowlmor in New York City.
Hosting this event were Narcolepsy Network President Patricia Higgins, Vice President Mee Ng and staff members Dr. Eveline Honig (Executive Director), Joyce Scannell (Office Assistant), and Kathleen [...]
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