Jeray Finishes Best LPGA Tourney of 2013

Nicole Jeray, WUN’s favorite LPGA golfer, finished last weekend’s Mobile Bay LPGA Classic at 3 under par, her finest showing of the young 2013 season. Though she has narcolepsy, Nicole’s dedication and love of the game drives her through the grueling physical and emotional challenges of the LPGA Tour.

Check out the interview she conducted with sports journalist Tommy Hicks following her first-round 4-under 68 last Thursday. http://www.al.com/sports/index.ssf/2013/05/nicole_jerays_best_round_of_ye.html

And learn how you can support WUN through Nicole’s Swinging for Sleep fundraising campaign all year.  http://www.nicolejeray.com/swinging-for-sleep/

Hey, Nashville, this is a Wake Up call!

We’re rolling out the biggest-ever annual Wake Up Nashville! narcolepsy awareness gala. It’s a chance to learn more about this devastating sleep disorder and find support services in your area.

For songwriting hopefuls everywhere, it’s a chance to enter our Wake Up Nashville! songwriting contest and have your original tunes heard by Music Row producers.

And we’ve lined up an evening of emerging and legendary Country Music stars.

June 21 @ 7 PM
The Bridge Building
Downtown Nashville, TN

Narcolepsy patients free. All others $25 per ticket. Tickets, songwriting submission, and details at https://www.wakeupnarcolepsy.org/events/wake-up-nashville/wake-up-nashville-2013/

Two WUN Associates Honored

Dr. Emmanuel Mignot is director of the Center for Sleep Sciences and Medicine, and professor of psychiatry and behavioral sciences at the Stanford University School of Medicine. Dr. Mignot is recognized as having discovered the cause of narcolepsy. His research is funded, in part, by donations from Wake Up Narcolepsy. 

Julie Flygare, a long-time friend of WUN, is an author and noted advocate for narcolepsy, a condition she is living with. The pair are being honored for their work to, respectively, find improved narcolepsy treatments and a cure, and to raise narcolepsy awareness everywhere. 

Dr. Mignot has been named to membership in the National Academy of Sciences. The academy is an honorific society that recognizes distinguished and continuing achievements in original research. His lab focuses on the neurobiology, genetics and immunology of narcolepsy, a disorder that causes periods of extreme daytime sleepiness, and other sleep disorders.

Julie's Wide Awake and Dreaming: A Memoir of Narcolepsy won first prize in the 2013 San Francisco Book Festival Biography/Autobiography competition. Winners will be honored on May 18 at the San Francisco Book Festival and at a private evening awards ceremony held at the Sir Francis Drake Hotel in San Francisco. 

"My heart raced with joy receiving the news!" says Julie. "I’m beyond grateful for this tremendous honor."

"We congratulate these outstanding individuals!" says Monica Gow, WUN Executive Director and Co-founder. "We thank them for their dedicated work on behalf of the millions of people worldwide living with this debilitating sleep disorder. We're proud to be working with them to bring narcolepsy out of the shadows and into the light." 

Diagnosing the Wrong Deficit

The New York Times, April 27, 2013

By Vatsal G. Thakkar, Clinical Assistant Professor of Psychiatry at the N.Y.U. School of Medicine, New York

“Sleep disorders are so prevalent that every internist, pediatrician and psychiatrist should routinely screen for them. And we need far more research into this issue. Every year billions of dollars are poured into researching cancer, depression and heart disease, but how much money goes into sleep?”

Read more at http://www.nytimes.com/2013/04/28/opinion/sunday/diagnosing-the-wrong-deficit.html?partner=rss&emc=rss&pagewanted=all&_r=1&

WUNners Safe After Marathon Tragedy 

We are relieved to report that none of our nine WUNners was seriously injured in yesterday's horrific bombing at the finish line of the Boston Marathon. And of course our thoughts are with the many scores of victims and their families.

However, the WUNners did not go completely unaffected. Both Shelby Harris and Jacqueline Sager witnessed the blasts ahead of them as they sprinted for the finish line. 

Shelby joined many other runners who were immediately directed off the course and into a parking garage. 

Jacqueline is OK now, but the shock of stopping so quickly and witnessing the devastation caused her muscles to shut down and her mind to go blank. Spectators or other runners carried her to an ambulance. But after being cleared and released, her shivering muscles again gave out, and police helped her out of the athlete area. 

And Stuart Smith had gotten to the finish line a just 20 seconds before the first blast a mere 30 yards back. 

WUN is deeply grateful to our marathon donors, who contributed more than $52,000 toward narcolepsy research. 

As WUNner Nancy Chamberlin aptly summed it up, "It was a very emotional day."

Narcolepsy Is Selected for FDA’s Patient-focused Drug Development Initiative (PFDDI) 

On April 11, the U.S. Food & Drug Administration (FDA) named narcolepsy one of the initial 12 disease areas selected for individual evaluation in FYs 2013-2015. The PFDDI will enable the FDA to gain patients' perspectives as part of the FDA drug approval process.  

WUN friend Julie Flygare testified before the FDA in October and spearheaded a campaign for online comments.

Monica Gow, WUN Executive Director, said, "Thanks to Julie and everyone who submitted comments, FDA officials did the right thing by including narcolepsy in the PFDDI."

According to the agency, “Over half of the comments received concerned lung cancer, narcolepsy, and interstitial lung disease,” Read the FDA’s announcement.

FDA meetings are scheduled to begin in September to address matters such as how narcolepsy affects patients’ lives, and their perspectives on the adequacy of available therapies. These meetings will include the participation of FDA officials, narcolepsy sufferers, and other stakeholders.

Thank you everyone who helped with this initiative. Narcolepsy awareness is indeed on the march!

FDA website

Faces in the Crowd: Dave Gow and Jared Chrudimsky

Jared Chrudimsky (L) and Dave Gow

117th Boston Marathon

By John Conceison, Telegram & Gazette Staff

Now Dave Gow will find out how his wife feels on Patriot's Day, though he's experienced some hints over the past few weeks of training.

For the last three years, Monica Gow had headed up the Wake Up Narcolepsy team at the Boston Marathon, even turning in a qualifying time in 2011, a year after she was featured here in Faces in the Crowd.

But when Monica knew in December a foot injury would sideline her for April, her eyes turned to Dave, a 48-year-old CPA whose active athletic interests lie with golf and hockey. The day after Christmas, he ran 4 miles “to see if I'd survive,” then declared himself a go for Boston.

“This is far outside my normal routine,” said Gow, who with Jared Chrudimsky will run their first Boston while raising money for Wake Up Narcolepsy, the foundation the Gows and friend Kevin Cosgrove founded in 2009. “But with Monica's injury, I guess I had a number.”

Read more!