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 AWAKE & AWARE 
November 2012
In This Issue
Survey Confirms Poor Narcolepsy Awareness
Narcolepsy CareLine Improves Care Access
Monica's TV Special
WUN Blog Kudos
Golfing for Narcolepsy
Monica Gow Reports
Wake Up Nashville!
WUN Research Funding
Research Update with Dr. Mignot
 
AWAKEN Survey Confirms Poor Awareness of the Impact of Narcolepsy

A survey of narcolepsy awareness conducted in the United States and released in July by Jazz Pharmaceuticals confirms that the majority of Americans views sleep as highly important. But only 50% believe narcolepsy can significantly impact overall health.

These findings seem inconsistent with evidence that symptoms of this serious sleep disorder can be severe enough to disrupt a person's social, personal and professional life and limit their activities.

Narcolepsy CareLine Improves Care Access

The new Narcole
psy CareLine, a partnership of the Patient Advocate Foundation and Jazz Pharmaceuticals, offers assistance to narcolepsy patients by providing personalized help to remove access barriers to care.

The Narcolepsy CareLine
866.538.7617

 

Stolz
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Monica's TV Special  


On July 29, our own Monica Gow, Executive Director of WUN, taped a segment for The Hank Stolz Experience, a popular talk show on Worcester TV Channel 3.

Monica shares with viewers her first-hand experience with narcolepsy as the parent of a child living with the condition; the reasons she and her husband David and Kevin Cosgrove conceived and launched WUN; and our mission to raise awareness of narcolepsy and underwrite research to find a cure.

Watch the video here

 

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WakeUpNarcolepsy.org Blog Earns Honors

 

HealthLine.com recently recognized the Wake Up Narcolepsy blog as one of the 11 Best Sleep Disorder Blogs of 2012!

HealthLine.com offers readers objective, trustworthy, and accurate health information, guided by the principles of responsible journalism and publishing.


 


Teeing It Up for Narcolepsygolf montage
August 23 dawned picture-perfect here in central Massachusetts: crisp blue skies, nary a breeze, and temps in the low-80s. Not a bad prescription for a great a day on the links.

For the 96 golfers signed up for our fourth annual golf outing on August 23 at beautiful Wachusett Country Club in West Boylston, ideal weather and shared esprit de corps made for an ace of a day!

Especially for the foursome of Steve Markos, Marc Puglia, George Cobleigh, and Chris Andrews, whose 15 under par score of 57 captured the day's honors.

 

 

 
nicole jeray
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Swinging for Sleep

 

LPGA Golfer Nicole Jeray teams up with Wake Up Narcolepsy to raise narcolepsy awareness and research funds.

 

 
Monica Gow Reports
 
MG photo/sig It has been a busy and exhilarating time for Wake Up Narcolepsy. Let me bring you up to date.

I'm pleased to report that our mission -- to raise narcolepsy awareness and support research for a cure -- is gaining sustained traction. We advocate for these causes through: 
  • Education initiatives for various stakeholder groups, and  
  • Sponsoring events that both support this mission and are, of course, enjoyable for participants.  
Beginning in March, during National Sleep Awareness Week, our good friend Julie Flygare organized and with WUN co-hosted SleepWalk 2012 on the National Mall in Washington DC. In all, more than 100 supporters gathered for a brisk walk on the Mall to bring greater attention to narcolepsy. Watch the video here.     

In April, for the third consecutive year, five runners completed a race to find a cure for narcolepsy by finishing the Boston Marathon in grueling 90-degree weather. Our WUNners team included WUN Board member Tabitha Crawford, of Nashville; and Kim and Ken MacAskill, of Ontario, Canada; my brother John Leahy, of Sandwich, MA; and me. 

Read more

Like us on Facebook 
 
 
Wake Up Nashville and Dream Big! Lights Up Nashville, Sheds Light on Narcolepsy

nash montage The stars shone brightly on September 21 at Nashville's Marathon Music Works (MMW), as some 250 supporters of Wake Up Narcolepsy gathered to listen, see and be seen, and become more aware.

This celebration, the culmination of our second annual song-writing contest, offered a rare opportunity to listen to some of Nashville's finest emerging songwriters and performers, current superstars, and Country music legends in the intimate, stylish MMW.

Read more and watch the video!





Wake Up Narcolepsy Continues Funding for Advanced Research on Narcolepsy

Wake Up Narcolepsy, recently made research grants totaling $40,000 to three world-leading scientific investigators.

The awardees are:
  • Dr. Emmanuel Mignot, director of the Center for Sleep Sciences and the Center for Narcolepsy at Stanford University's School of Medicine, $20,000. 
  • Dr. Thomas Scammell, of Beth Israel Deaconess Medical Center, Boston, and Associate Professor of Neurology at Harvard Medical School, $15,000. 
  • Dr. Indra Narang, Director of Sleep Medicine at the Hospital for Sick Children, Toronto, and Assistant Professor in Pediatrics at the University of Toronto, $5,000. 

Read more 


mignot 9-12 scammell narang
patient day 1 WUN Co-hosts Narcolepsy Research Update

On September 22, Wake Up Narcolepsy and Narcolepsy Network provided an opportunity for narcolepsy sufferers and family members to hear about the latest advances in narcolepsy research from one of the leading research scientists in the field and a benefactor of WUN research grants, Dr. Emmanuel Minot, director of the Stanford University Center for Narcolepsy Research.

Nashville's St. Thomas Hospital was the venue for this daylong gathering, attracting some 100 attendees. It was also an opportunity for participants to donate a blood sample for Dr. Minot's ongoing Stanford research.

In addition, St. Thomas Hospital's Dr. Kelly Carden discussed new resources for narcolepsy patients. And Mali Einen, also of Stanford, gave a presentation, "Living Well With Narcolepsy: Optimizing Your Quality of Life."  

Learn more about the WUN research program here

patient blood 9-12