Thursday, April 27th, 2017

Member Highlights


Wake Up Narcolepsy
June 2013

Wake Up Nashville! 2013
The Bridge Between Light and Dark

3rd Annual Wake Up Nashville! Event
to Promote Narcolepsy Awareness

Join us for a star-studded evening with some of Nashville’s
emerging songwriting stars and special guest Soul Incision!

It’s Summer Solstice, and what better way to spend the longest day of the year than in the nations “IT” city! Narcolepsy patients, physicians, artists, record executives, and supporters will all come together for a special night promoting narcolepsy awareness and greater hope for people living with this lifelong sleep disorder.

When: Friday, June 21, 2013, 7-10 PM
Where: The Bridge Building, 2 Victory Avenue, Nashville, TN 37213
Ticket Info: We are honored to host all people with narcolepsy at no charge
General Admission: $25 (tax-deductible donation)
Group Tickets: Packages available (email kmcdonnell@wakeupnarcolepsy.org)

National Sleep Foundation
April 2013

Wake Up Narcolepsy
April 2013

Wake Up Narcolepsy co-sponsored Sleep Walk 2013, which took place on March 3 on the National Mall in Washington, DC. We promoted the gathering through various digital media under the banner, “Walking in Lincoln’s Footsteps to Raise Narcolepsy Awareness” and handed out WUN literature and bracelets at the event. Though the weather was cold and blustery, Sleep Walk 2013 attracted about 125 individuals living with narcolepsy and other sleep disorders, and other advocates for healthy sleep.

On March 2, Monica Gow, WUN executive director and co-founder, along with her 15-year-old son, who is living with narcolepsy, gave a presentation on Waking Up to Childhood Narcolepsy at the Pediatric Sleep Symposium, sponsored by Sick Kids Hospital of Toronto.

Later in the week, Monica and her son were featured on the FOX network Ricki Lake Show in a program addressing sleep disorders. And in a follow-up interview, the Boston FOX affiliate interviewed Monica and Dr. Kenneth Sassower, a neurologist at Massachusetts General Hospital.

Willis-Ekbom Disease Foundation
Formerly known as the RLS Foundation

March 2013

Restless Legs Syndrome Foundation is now the Willis-Ekbom Disease Foundation

The Restless Legs Syndrome Foundation is now the Willis-Ekbom Disease Foundation. The Rochester-based patient organization serves healthcare providers, researchers, and an estimated seven million people in the U.S. and Canada who have Willis-Ekbom disease (WED). The Foundation has changed its name to promote respect and ease of use of the name Willis-Ekbom disease in the medical and scientific communities and the public sphere.

Willis-Ekbom disease is a chronic neurologic disorder that causes an irresistible urge to move the legs or other body parts, often accompanied by unusual or unpleasant sensations. These sensations tend to get worse when individuals are at rest—for example, when going to sleep at night or sitting for long periods of time. Because symptoms usually intensify in the evening, they can severely disrupt sleep and reduce quality of life.

An estimated 7–10 percent of adults worldwide have the disease, which often runs in families. Although many people have a mild form, millions are seriously impacted. Several genes have been identified with an increased risk for developing the disease. Other factors under study include iron metabolism and neurotransmitter dysfunctions involving dopamine and glutamate.

The Foundation is dedicated to improving the lives of men, women and children who live with WED by increasing awareness, improving treatments and through research, finding a cure. The Foundation serves healthcare providers, researchers, over 4,000 members and an estimated seven million individuals in the U.S. and Canada who have the disease. The Foundation’s Research Grant Program has awarded over $1.4 million to medical research on causes and treatments. For more information, visit www.willis-ekbom.org.

Wake Up Narcolepsy
March 2013

Takin’ It to the Streets – Again!

Again in 2013, Wake Up Narcolepsy’s WUNners Boston Marathon Running Team will race for a cure for narcolepsy. The WUNners will toe the starting line in Hopkinton on April 15 for the117th Boston Marathon. It will be the WUNners’ fourth consecutive race to benefit people everywhere living with narcolepsy.

Circadian Sleep Disorders Network
February 2013

Circadian Sleep Disorders Network recently celebrated an anniversary: one year since we registered our first dues-paying members.

During our inaugural year, we expanded our website with a wealth of information on circadian disorders, including references to journal as well as popular articles. We’ve developed an informational brochure and Q&A booklets, available on our website. We established a medical advisory board that includes world-renowned researchers and practitioners in the field of circadian rhythm and sleep. We’ve posted our first video on YouTube, have been interviewed on salary.com, and are contacting sleep labs and the press to promote awareness of circadian disorders. We have affiliated with the National Sleep Walk.

Circadian Sleep Disorders Network is a nonprofit organization dedicated to promoting awareness and accommodation of chronic circadian rhythm disorders including Delayed Sleep Phase Disorder and Non-24-Hour Sleep-Wake Disorder.

Delayed Sleep Phase Disorder is a condition characterized by an inability to fall asleep until very late at night, with the resulting need to sleep late in the morning (a delayed body clock).

Non-24-Hour Sleep-Wake Disorder, or Free-Running Disorder, is a condition in which a person’s day length is significantly longer than 24 hours, so that sleep times get later each day, cycling around the clock in a matter of weeks.

Both conditions often interfere with societal obligations, such as work, school and parenting, and often result in severe sleep deprivation. Studies indicate that half a million adult Americans suffer from these sleep disorders.

Excessive Sleepiness

National Sleep Foundation
January 2013

National Sleep Foundation Launches New Website on Excessive Sleepiness

WASHINGTON, DC, January 8, 2013 – The National Sleep Foundation (NSF) launched a new website today to help millions who suffer from excessive sleepiness. This online resource center explains how excessive sleepiness affects health, safety, and everyday performance, and provides free patient resources.

The National Institutes of Health estimates that 13-20% of the U.S. population suffers from excessive sleepiness.

“Excessive sleepiness is common, debilitating and often misunderstood,” says David Cloud, CEO of the NSF. “The National Sleep Foundation’s new excessive sleepiness website helps people find the answers they need to understand and overcome excessive sleepiness.”

Visit ExcessiveSleepiness.sleepfoundation.org for answers about excessive sleepiness.

Wake Up Narcolepsy
December 2012

Narcolepsy and Cataplexy Circuitry Becomes Clearer After a Decade of Research
A recent Neurology Today article focuses on new research underwritten in part through financial contributions from Wake Up Narcolepsy. Dr. Thomas Scammell of Harvard University Medical School has developed groundbreaking insights into the role of the neurotransmitter orexin, or hypocretin, in signaling the neuropathology of the disorder. Read the full article here.

Local Narcolepsy Awareness Events
In November, Wake Up Narcolepsy helped two women living with narcolepsy promote and host awareness events in their local areas. A woman in Colorado had 50 guests in her home and a woman in DC had 10 guests at her church who received narcolepsy information and the opportunity to make donations to benefit WUN’s advocacy of narcolepsy awareness and medical research. To learn how WUN can help organize and promote awareness events in your area, contact Ken McDonnell, Communications Director, 774-364-4965 or kmdonnell@wakeupnarcolepsy.org.

WUN Underwrites Narcolepsy Research in Toronto
Wake Up Narcolepsy presented $5,000 to Dr. Indra Narang to help fund her research on narcolepsy in children. Dr. Narang is Director of Sleep Medicine at the Hospital for Sick Children of Toronto and an Assistant Professor of Pediatrics at the University of Toronto.

American Association for Respiratory Care
October 2012

The American Association for Respiratory Care’s (AARC) Congress 2012 will be held in New Orleans, LA November 10-13, 2012 at the Ernest N. Morial Convention Center. This 58th International Respiratory Convention & Exhibition is the world’s premier respiratory convention where the profession’s thought leaders come together to present, network, and learn about emerging technologies and the transformation of respiratory care.

A number of symposiums and presentations in the area of sleep are scheduled throughout the event. Previews of some of the topics include the following:

  • Sleep in woman and their children with focus on chronic sleep deprivation in the family, what is normal sleep for women, and sleep disorders in women and children
  • The results of a scientific study on the “Sleep Patterns of Young Adults on the Autism Spectrum”
  • A blueprint for starting a sleep center/lab including competency assessment for sleep personnel
  • Sleep apnea in the bariatric population with emphasis on how significant weight loss via surgery can impact the severity of their apnea

Respiratory therapists play a valuable role in performing a number of sleep-related services since individuals who require polysomnographic services often have other clinical co-morbidities, such as systemic and pulmonary hypertension, cardiac arrhythmias, and obesity.

View the full program at www.aarc.org.

National Sleep Foundation
October 2012

nsf
National Sleep Foundation (NSF) Creates Sleep Shop, the One-Stop Place for Patient and Doctor Sleep Supplies

Arlington, VA, October 2, 2012 – The National Sleep Foundation, a 501(c)3 charitable, educational, and scientific not-for-profit organization dedicated to improving sleep health and safety, today announced the addition of a one-stop sleep shop to its website www.sleepfoundation.org.

The newly launched sleep shop contains a complete line of sleep therapy products for a more restful night’s sleep, including CPAP machines, masks and accessories, specialty pillows, and products for insomnia and snoring from leading manufacturers.  Doctors and sleep centers can purchase patient education brochures to help patients understand and cope with their sleep problems and enjoy the benefits of healthy sleep.

Sleep shop visitors will also find official National Sleep Foundation licensed products for the bedroom environment from companies such as Serta, Ellery Homestyles, Philips, Comfortex, Marpac, Lark and Fabrictech International.

“As the number one trusted brand for sleep education, it’s important that our visitors are also able to shop for sleep products from brands they trust to improve their sleep habits,” said David Cloud, CEO. ”Now, our comprehensive website provides the public not only with a place to go for unbiased sleep advice and information, but – with the addition of the sleep shop – it also provides patients with a place to shop for top-of-the-line products that will help them get a more restful night’s sleep. It also gives doctors and sleep centers the ability to purchase everything they need for their patients, including patient educational brochures and materials.”

To browse NSF’s sleep shop or purchase sleep supplies, visit nsf.patientsleepsupplies.com.

About the National Sleep Foundation

The National Sleep Foundation is dedicated to improving sleep health and safety through education, public awareness and advocacy. It is well-known for its annual Sleep in America®poll. The Foundation is a charitable, educational and scientific not-for-profit organization located in Washington, DC. Its membership includes researchers and clinicians focused on sleep medicine, professionals in the health, medical and science fields, individuals, patients, families affected by drowsy driving and more than 900 healthcare facilities throughout North America. Please visit www.sleepfoundation.org for more information.

Narcolepsy Network
October 2012

Each year, in the fall, Narcolepsy Network holds a conference for its members, their families, friends and others in the sleep community. It is a weekend filled with speakers (Including Researchers, Sleep Doctors, Counselors, etc.), discussions about narcolepsy, coping skills, the latest in research and treatments and so much more. In addition, the Annual Membership Meeting is held during this time. The InterContinental Hotel Cleveland (Ohio) will host our 27th Annual Conference from October 19-21 this year.

One of the most anticipated elements of the weekend is the fellowship with other people with narcolepsy along with their families and friends. For many of the new attendees, the Conference provides their first opportunity to meet someone else that shares their diagnosis. It is an educational and emotional experience that many have said is a life-changing experience.

Wake Up Narcolepsy
September 2012

On Friday, September 21, 2012, Wake Up Narcolepsy will host the Second Annual Wake Up Nashville musical concert at Marathon Music Works in Nashville, TN. It’s our second annual songwriting contest and celebration and will include music from Nashville sensation Jimmy Wayne, The Greenways, and legends Dave Gibson, Bobby Wood, Mark Wayne Glasmire, and more. The event benefits Wake Up Narcolepsy, narcolepsy awareness, and research to find a cure. Go to wakeupnarcolepsy.org for tickets.

On Saturday, September 22, 2012, Dr. Emmanuel Mignot, Director of Stanford University Center for Narcolepsy Research, will provide a narcolepsy research update to people with narcolepsy, their family and friends, and researchers and clinicians. The event is 9:30am – 2:00pm CT at Saint Thomas Hospital, Conference Dining Room A&B, 4220 Harding Road, Nashville, TN 37205. Learn from Dr. Mignot about the latest developments in narcolepsy research, hear about new patient resources from Dr. Kelly Carden of St. Thomas Hospital, and participate in Dr. Mignot’s clinical research by providing a blood sample to advance current knowledge. If you have narcolepsy, this is your opportunity to contribute to research leading to better, more effective treatments and, someday, a cure. To RSVP, email Mali Einen at einen@stanford.edu or call 650-721-7550.


American Sleep Apnea Association

August 2012

American Sleep Apnea Association to Amplify the Voices of Patients

The American Sleep Apnea Association will bring the voices of sleep apnea patients to the fore in a first-time-ever patient roundtable it is hosting at the Tenth World Conference on Sleep Apnea, to be held in Rome Aug. 27 through Sept. 1.

Meetings on health issues in the past have tended to give little or no attention to the needs, perspectives, and concerns of patients suffering from the diseases under discussion.

Patient participants in the roundtable, drawn from a variety of sleep apnea organizations around the world, will be challenged to formulate a patient’s bill of rights. That document will become a key part of an overall call to action that patient groups can subscribe to and help implement.

Two other items are also on the preliminary agenda:

■ Determining how best to pursue the World Health Organization’s goal of decreasing the frequency of noncommunicable diseases including sleep apnea by 25 percent by 2025.

■ Establishing a date for an annual World Sleep Apnea Awareness Day beginning in 2013.

Sleep apnea is a chronic, life-shortening, often unrecognized disease that afflicts hundreds of millions of people around the world. Left untreated it can lead to heart disease, type 2 diabetes, and cancer.


National Institute of Diabetes and Digestive and Kidney Diseases
August 2012

The NIDDK Sleep Extension Study Group has a paper in the Journal of Clinical Endocrinology & Metabolism. An abstract of the article Poor Sleep Quality and Sleep Apnea Are Associated with Higher Resting Energy Expenditure in Obese Individuals with Short Sleep Duration can be read here.


National Sleep Foundation

July 2012

bedroom.sleep.com learn how

Contact: Tom Clifford, email: tclifford@sleepfoundation.org,
phone: (703) 243-1697

NATIONAL SLEEP FOUNDATION LAUNCHES NEW INSIDE YOUR BEDROOM WEBSITE

Washington, DC, July 18, 2012-The National Sleep Foundation is pleased to announce the launch of its new “Inside Your Bedroom, Use Your Senses!” website. It is the first site to use sleep science and the five senses to help people create their best individual sleep environment.

“This site includes fun, practical information to help people transform their bedrooms into a sanctuary for sleep,” says David Cloud, CEO of the National Sleep Foundation. “We believe everyone can benefit from better sleep and this site provides easy tips and links to more in-depth research to help people improve their sleep environments.  It also gives guidance for when more help is needed.”

The National Sleep Foundation will continue to add new, updated information to the website in the coming months.

Visit www.bedroom.sleepfoundation.org to see, hear, touch, smell, and taste how you can improve your bedroom and your sleep!