So This is 35…

September was a whirlwind and somewhere in there, I turned 35.

So now it’s been 11 years since I was diagnosed with type 1 narcolepsy with cataplexy and five years since I moved to Los Angeles and founded Project Sleep.

Where the heck did the first half of my 30s go?

A few flashbacks come to mind – mostly parking lots across Los Angeles, where my car doubled as Project Sleep’s “office” (while working full-time in the cancer space and running PS on the side). Those same parking lots also tripled as napping spots to help me through long commutes.

A lot else happened – two marathons, two heart-wrenching breakups with the same guy, two apartments in the same “Melrose Place” that has truly become home, and so many incredible opportunities to raise awareness and share my story around the world. I guess the first half of my 30s was pretty eventful. 😉

All this landed me where I am today. This past month was one of the most surreal months of my life – filled with goosebumps, laughter and lifetime highlights that I’m still processing and will cherish forever.

September 2018 Highlights:

  • Sept 4th: Met a dog with narcolepsy, Watson and recorded an informative and fun Facebook Live with Dr. Mignot and Watson in Palo Alto, CA.
  • Sept 6-8th: Participated in the beautiful wedding of one of my best friends to an amazing man and visited this same friend’s stunning art exhibit that she curated (#badass) in San Francisco, CA.
  • Sept 9-13th: Attended the International Symposium on Narcolepsy in Beverly, MA.
  • Sept 14th: Celebrated turning 35 with family, friends and the most delicious Party Favors cake!
  • Sept 15th: Hosted Project Sleep’s “Innovations in Narcolepsy Awareness” event in Boston, MA.
  • Sept 21 – 24th: Filmed videos to showcase Project Sleep’s Rising Voices of Narcolepsy program with five amazing speakers in San Jose, CA.

**Note: Something else really exciting happened too, which I’ll announce TOMORROW – on Monday, October 1st at 12noon ET via Instagram Live!! Be sure to tune in. 😉 **

Finding My Core Confidence

In my …

New Screening Tool Can Improve Quality of Life for Epilepsy Patients with Sleep Apnea

Rutgers researchers have developed a tool to help neurologists screen for obstructive sleep apnea (OSA) in people with epilepsy whose seizures can be magnified by sleep disorders.

The study appears in the journal Neurology Clinical Practice.

Although detection and treatment of OSA can improve seizure control in some patients with epilepsy, providers have not regularly assessed patients for those risk factors. The researchers developed an electronic health record alert for neurologists to evaluate a patient’s need for a sleep study.

This study can determine the necessity for treatment, which can result in improved seizure control, reduction in antiepileptic medications and reduce the risk of sudden unexpected death in epilepsy.

OSA occurs when breathing is interrupted during sleep. The Epilepsy Foundation estimates that approximately 40% of people living with epilepsy have a higher prevalence of OSA that contributes to poor seizure control.

“Sleep disorders are common among people living with epilepsy and are under-diagnosed,” says lead author Martha A. Mulvey, APN, a nurse practitioner at University Hospital’s department of neurosciences, in a release. “Sleep and epilepsy have a complex reciprocal relationship. Seizures can often be triggered by low oxygen levels that occur during OSA. Sleep deprivation and the interruption of sleep can therefore increase seizure frequency.”

The researchers developed an assessment for identifying OSA consisting of 12 recognized risk factors, which are embedded in the electronic health record. If a patient has at least two risk factors, they are referred for a sleep study. The risk factors include: body mass index greater than 30 kg/m2; snoring; choking or gasping in sleep; unexplained nighttime awakenings; morning headaches; dry mouth, sore throat or chest tightness upon awakening; undue nighttime urination; decreased memory and concentration; neck circumference greater than 17 inches; excessive daytime sleepiness; undersized or backward displacement of the jaw; and an assessment of the distance from the tongue base to the roof of the mouth.

“It was found that placing this mandatory alert for providers to screen for OSA in the EHR markedly increased the detection of at-risk epilepsy patients who should be referred for a sleep study,” says co-author Xue

A New Estimate for the Number of People in Europe Who Have Obstructive Sleep Apnea

Roughly 175 million Europeans have obstructive sleep apnea, according to an presented by ResMed at the European Respiratory Society’s (ERS) annual ERS Congress in Paris. Leading researchers estimate 90 million Europeans have moderate to severe sleep apnea, meaning they experience at least 15 breathing events an hour during sleep. These statistics are based on the latest scoring rules for determining one’s apnea–hypopnea index (AASM 2012) and are connected with a 16-country study announced in May 2018 that revealed an estimated 936 million people worldwide have sleep apnea. The new global prevalence is nearly tenfold higher than the previous one—100 million—estimated by the World Health Organization in 2007.

European countries with the highest prevalence are:

  • Russia, 40 million
  • Germany, 26 million
  • France, 24 million
  • Ukraine, 13 million
  • Spain, 9 million
  • United Kingdom, 8 million

“This data is a warning call to Europe’s doctors and other care providers to properly identify, screen and diagnose these people so they can get the life-changing treatment they need,” says Adam Benjafield, PhD, lead researcher and ResMed’s vice president of Medical Affairs, in a release.

Benjafield says one sign of an at-risk patient is whether they have a related chronic medical condition:

  • 83% of people with drug-resistant hypertension have sleep apnea
  • 77% of people with obesity
  • 76% of people with chronic heart failure
  • 72% of people with type 2 diabetes
  • 62% of people with a prior stroke
  • 49% of people with atrial fibrillation

“Doctors should screen their patients if they have any of these conditions,” says Benjafield, “especially if a patient has exhibited sleep apnea-related symptoms like snoring, daytime sleepiness, or frequent nighttime urination.”

from Sleep Review…

Canada Woman Loses Snoring Row Complaint with Neighbours

A rental board tribunal said a tenant’s excessive snoring could not be considered a normal level of noise expected in an apartment complex, reports the BBC.

In October, they showed up at her door to try and find a solution to the situation. They asked the tenant about her health and brought her two boxes of products meant to reduced snoring.

from Sleep Review…

Join Me in Sydney! Narcolepsy Australia Event

Join Us In-Person:

I’m so excited to head to Sydney, Australia for the “Insight” Peer Event on October 13, 2018 hosted by Narcolepsy Australia! Only a few spots left, so register today:

I’m preparing a new presentation for this speaking engagement – with exciting updates since I last visited to keynote the Narcolepsy Australia conference in 2015. I can’t wait to see many old friends and to make new connections. I will also bring Project Sleep awareness items along with a few copies of my book, Wide Awake and Dreaming: A Memoir of Narcolepsy to sell and sign.

Join Us via Facebook Live:

SAVE THE DATE: Project Sleep will host a Facebook Live event from Sydney! Tune in on Saturday, Oct. 13, 2018 at 8:00 pm ET (which is Sunday, Oct. 14th at 11 a.m. in Sydney). We will sit down with a few amazing narcolepsy community leaders to discuss the narcolepsy experience in Australia compared to the U.S. and how we connect and collaborate around the world!

To connect with our FB live event, go to Project Sleep’s Facebook page on Saturday, October 13, 2018 at 8:00 p.m. ET and the video will appear on our newsfeed.

Narcolepsy Australia is a fantastic organization and the Australian narcolepsy community is so close to my heart. Hope to see you there!

from Julie Flygare…

Getting Rid of the Pacifier

Pacifiers are a great source of comfort for babies, and an absolute blessing for any parent who has ever found themselves in need of a quick solution to their baby’s fussing. But they can’t stick around forever, and taking them away can be a hard milestone for your little one to accept.

In today’s video, I have some tips to help you decide when the time is right to ditch the dummy, as well as some clever strategies for minimizing the amount of protest and sorrow on the part of your little one.

Rather read than watch? Click here.

Understanding Sleep Apnea Mouthpieces

Sleep apnea is a silent killer. That is without a doubt. For years, the public has turned a blind eye to the dangers of sleep apnea and only noticed the annoying loud snoring sound made by people suffering from this condition. We have even gone past the joke already and see sleep apnea for the real health danger that it is. You can see it everywhere around you. There are more sleep clinics now that cater to patients with sleep problems that often stem from sleep apnea. It is an obvious acknowledgment that its dangers can no longer be ignored and we should finally put modern medicine into good use and relieve chronic snorers from this pesky habit and let them enjoy a safe and restful sleep once again.

There is even no need to head to the OR table to go under the knife to remedy this problem or wear a bothersome CPAP mask that has a very low compliance rate because it is too challenging to use especially when you are asleep. Even if you miss out on the gold standard of sleep apnea treatment, there are more convenient anti-snoring mouthpiece options right now that can work for whatever lifestyle. These are relatively affordable and easy to use as well, so there is no more reason for you to keep on losing sleep when there are different anti-snoring mouthpieces to choose from.

The 18 million Americans with obstructive sleep apnea sufferers are a powerful incentive for device manufacturers, and there are myriad alternatives to CPAP in the marketplace and under development. Some of them are even seeking backers on internet fundraising sites. Newer FDA-approved treatments include Provent — nose plugs that create pressure when air is exhaled and Winx — a device that sucks the tongue forward to keep the airway open. But they are expensive and may not be covered by insurance. Mandibular advancement devices — a form of dental night guard — have been around for awhile. They are the only CPAP alternative that is likely to be covered by Medicare and other insurers.

(Via: …

Reporting Back from the International Symposium on Narcolepsy

This past week, I was honored to represent Project Sleep at the 7th International Symposium on Narcolepsy from Sept 9 – 13, 2018 in Beverly, MA. At this meeting, leading narcolepsy researchers and clinicians from around the world came together to discuss developments in the clinical features of narcolepsy, promising treatment advances, and the underlying neurobiology of the condition.

As a person living with narcolepsy with cataplexy, the schedule was action-packed from breakfast to dinner, which made me nervous. However, I was so glad the conference rooms were not far from the hotel rooms, so I could easily run back to take my daily naps – to keep my cognition high and cataplexy low. 

Dr. Giuseppe Plazzi of Italy

Our International Community Rocks

I was thrilled to participate in the full meeting — I learned a lot and made great new connections. In addition, it was fun to catch up with some of my favorite researchers and clinicians from the United States, the Netherlands, France, Taiwan and Italy. 

One awesome moment that made me smile was when world-renowned Italian researcher and clinician, Dr. Giuseppe Plazzi, pulled up the cuff of his jacket to show me that he was still wearing his Project Sleep Narcolepsy: Not Alone bracelet! In September 2016, I was so lucky to visit with the Italian narcolepsy community in Bologna and to meet Dr. Plazzi and his team. Two years later, Dr. Plazzi is still wearing his same bracelet! It’s a small thing but it speaks volumes, don’t you think?

Highlights from the Symposium

  • There is exciting progress being made to better understand the underlying neurobiology of narcolepsy. Multiple researchers spoke about new evidence of the particular T-cells that may be involved in the attack on hypocretin/orexin neurons in type 1 narcolepsy. I will share more information once these new findings are published and publicly available.

Dr. Emmanuel Mignot Presenting on New Evidence of the T cells involved in the loss of hypocretin/orexin.

  • There was an important discussion throughout the meeting regarding improving the classification and understanding of type 2 narcolepsy and idiopathic hypersomnia. Increasingly, research is

My Toddler Keeps Leaving Her Crib

Toddlers are surprisingly adept when it comes to climbing, and once they’ve figured out how to climb out of their crib, they tend to get a pretty big kick out of it. It can be a fun game for them, but much less so for you, if they’re leaving their room several times a night when they’re supposed to be sleeping.

I’m happy to tell you that there’s a fairly easy solution to this problem that doesn’t involve any crying, protesting, or a frustrating battle of wills between you and your toddler, and I’ll tell you all about it in this week’s video.

Rather read than watch? Click here.

Don’t Let Snoring Ruin The Spark

Couples out there can probably relate to the fact that you may love your spouse or partner to the moon and back but they can also bring out the worst in you. It may sound ironic but it is a reality of life. What’s even more annoying is the fact that when you want nothing else but to rest and grab some snooze, your partner’s snoring wakes you up and ruin a good night’s sleep for you. It can be pretty exasperating especially if you lead a busy and stressful life that one of the major things you are looking forward during the day is the time to finally rest and relax and drift off to a deep and uninterrupted sleep.

Almost 45% of snorers are men and a 28% are women according to statistics and this number is based on 60-year-old participants. Many couples fight over snoring and some even go to great lengths as sleeping in separate rooms or even separating for good because the snoring has been too much for the non-snoring partner. What most of them not realize is that aside from the discomforts the loud sounds cause, there are serious risks caused by this condition. Sleep apnea is no laughing matter. It not only makes one snore so loud but it also causes frequent breathing gaps that happen continuously throughout your slumber. You essentially stop breathing in your sleep as your brain appears to choose between sleep and breathing.

Forty years ago, snoring was considered little more than an annoyance, something you might have teased your Uncle Al about for keeping the neighborhood awake all night.

But, in recent years, research has shed light on the harmful health effects of snoring and its more extreme form, obstructive sleep apnea, which can include a heightened risk of cardiovascular disease and mortality.

And with rates of snoring believed to be on the rise, partly because of an aging and increasingly overweight population, snorers (and their bedmates) are increasingly in search of solutions.

“People are becoming more aware of snoring because their spouses are less likely to