Hypersomnia Foundation

Sleep-Wake Disturbance Following a Traumatic Brain Injury

Background

According to the Centers for Disease Control and Prevention (CDC), more than 2 million people in the United States suffer a traumatic brain injury (TBI) every year. Most people with a TBI will also experience a sleep-wake disturbance (a real or perceived change in night-time sleep with resulting daytime impairment, SWD).

Over the past 10 years, a group of scientists in Switzerland has been focusing their research on SWD after TBI. In 2015, Dr. Imbach and his colleagues published their results of a study in which they examined the sleep of 60 patients 6 months after the patients had experienced a TBI. They found that the presence of bleeding in the brain at the time of injury was the greatest risk factor for developing a SWD. A new study followed those same patients for another 12 months (18 months total), and we report the results of that study here.

Who were the participants in the study and what did they do?

brain_xray158w210hThe 60 participants in this study were selected from among 140 adults who had experienced a first-ever TBI. They each underwent a computerized tomographic (CT) scan within 4 hours after the TBI and detailed assessment with standard clinical metrics (e.g., the Glasgow Coma Scale, which is a rough measure of the severity of the brain injury). The participants were matched with 42 people who did not have a TBI but who were of similar age, sex, and sleepiness (control group). Eleven people in the control group dropped out of the study, leaving 31 with complete data from all testing.

The average age of participants was 33 in the TBI group and 36 in the control group. Eleven participants in each group were men.

All participants wore an actigraph for two weeks on two separate occasions: for those with a TBI, six months after having the TBI and then again 18 months after the TBI. (An actigraph, which looks like an oversized watch, is typically worn on the nondominant wrist [that is, if you are right-handed, you would wear it on your left wrist]. It contains an accelerometer and records movements. Once the testing period is complete, the data are downloaded from the device and analyzed off line.)

Participants also reported their subjective perceptions of sleepiness and daytime fatigue by way of Epworth Sleepiness (ESS) and Fatigue Severity (FSS) Scales at these same intervals.

Who were the researchers and what did they do?

Dr. Lukas Imbach and his colleagues in Zurich and Bern, Switzerland, conducted a number of objective measures of sleep in all of the participants in both groups. In the TBI group, this testing took place six months after the TBI and, again, 18 months later.

They performed overnight sleep tests (polysomnography), commencing at 23:00 and terminating at 07:00, before then assessing for participants’ increased propensity to daytime sleepiness by way of daytime nap studies (i.e., the Multiple Sleep Latency Test or MSLT). They compared the findings from the actigraphs, polysomnograms, and MSLTs and the FSS and ESS scores between the two groups, and among the TBI patients at two different time points following their head injuries.

What were the results of the study?

When measured over 24 hours with actigraphy, night-time sleep, but not daytime sleep, was longer in the TBI group (8.1 hours) as compared with the control group (7.1 hours).

Delta power, sleep fragmentation, and distribution of sleep stages on the polysomnogram were normal in the TBI group. Sleep latencies on the MSLT were shorter in the TBI group (an average of 7 minutes) as compared with the control group (11 minutes). Based on the MSLTs (objective measure), excessive daytime sleepiness (EDS) was present in 67% of people with a TBI and 19% of control subjects. These levels of EDS remained fairly constant in the TBI group when comparing results at six and 18 months after the injury.

When comparing the objective and subjective measures of EDS (that is, MSLT vs ESS and FSS), the researchers identified a mismatch, “indicating persistent misperception of sleep-wake disturbance” in the group with TBI.

The presence of bleeding in the brain with the TBI and more severe TBI (lower Glasgow Coma Scale scores) predicted objective metrics of increased sleep quantities at night only during the major sleep period and EDS at 6 months after the TBI. Although findings at 18 months following the TBI emphasize the chronic nature of the negative impact of TBI upon SWD, the 6-month association between bleeding in the brain with the TBI and initial clinical severity of the injury was inexplicably no longer evident at 18 months following TBI.

What were the authors’ conclusions?

“We now provide long-term, prospective, controlled, and electrophysiologic evidence that sleepiness and [increased sleep need] remain a significant problem not only in the first months after TBI, but also in the long run.”

Imbach LL, Buechele F, Balko PO, Li T, Maric A, Stover JF, Bassetti CL, Mica L, Werth E, Baumann C. Sleep-wake disorders persist 18 months after traumatic brain injury but remain underrecognized. Neurology. 2016 ePub ahead of print.

An accompanying editorial to this paper concludes that, “Imbach et al. make a compelling case that posttraumatic sleep-wake disorders may represent a silent epidemic. With epidemiologic studies showing rising rates of TBI in civilian and military populations over the last decade, and with Imbach et al. now showing that the majority of patients with TBI have objective evidence of sleep-wake disturbance, the authors of future clinical guidelines will need to consider the emerging evidence supporting sleep studies in the care of patients with TBI.”

Edlow BL, Lammers GJ. Bringing posttraumatic sleep-wake disorders out of the dark. Neurology. 2016 ePub ahead of print.

Editor’s comments

It is important to realize that, although the MSLT results showed a shortened sleep latency in the participants with TBI, as compared with those without TBI, actigraphy identified no differences between the two groups with regard to amount of time spent sleeping during the daytime.

Note also that the overnight sleep studies were terminated at 0700, resulting in a maximum potential sleep time at night of 8 hours. Thus, while 67% of participants with TBI had a mean sleep latency of less than 8 minutes on the MSLT and would therefore meet International Classification of Sleep Disorders-3rd edition (ICSD-3) criteria for idiopathic hypersomnia, how many may have qualified for a diagnosis based on an overall sleep length exceeding 11 hours is not clear based on how the testing was conducted. It remains to be determined whether TBI, no matter how severe initially, might contribute to hypersomnia otherwise presumed to be “idiopathic,” and, if eventually deemed to meet ICSD-3 criteria for idiopathic hypersomnia, what the implications might be for prognosis and treatment.

This article was written by a volunteer medical writer and reviewed by David Rye, MD, PhD.

 

Posted in: BeyondSleepy, Hypersomnia, idiopathic hypersomna, Research, SomnusNooze

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Conference Details – Beyond Sleepy in the Mile High City!

Conference rectangle ImageIf you haven’t made your plans yet to attend the Hypersomnia Foundation’s regional conference in Denver—Beyond Sleepy in the Mile High City—you might want to do so today. Tickets are selling fast and seating is limited. The big event is in less than seven weeks! A registration link and additional information are available on the Hypersomnia Foundation website, or you can click on the ticket image below to go straight to the registration site. 

Wondering whether it’s going to be worth the trip to Denver? Well, wonder no longer. Whether you’re flying across country or driving down the mountain, this meeting offers plenty of time to network and socialize in addition to hearing some fantastic speakers. Remember, attending in person is the only way for you to participate in the question-and-answer session with the experts.

tickets 

SCHEDULE OF EVENTS

 Saturday evening, June 11, from 6:00 to 10:00 pm—Join us in the Atrium Alcove on the talkingfourth floor of the Embassy Suites Hotel 1420 Stout Street, Denver, CO. Catch up with old friends and meet new people as we play board and card games or just spend some time in conversation.

Sunday morning, June 12, from 7:30 to 10:30 am—Join us for a hot made-to-order breakfast at the Embassy Suites Hotel and grab a spot at one of the tables we will have reserved. Don’t worry if you’re not up at 7:30; we’ll save you a place to join us later. (Breakfast is free if you are a guest at the Embassy Suites Hotel and $20 if you are not).

Sunday morning from 10:00 am to noon—Join us to pick up your name badge at registration on the third floor in the Crestone foyer at the Embassy Suites Hotel. Didn’t have enough time to socialize on Saturday evening? We will have a designated gathering space available during this time. Be sure to eat before coming to the conference. We will not be serving lunch.

Sunday afternoon from noon to 5 pm—Join us in the Crestone Salon B meeting room on the third floor of the Embassy Suites to hear six scientific presentations covering the latest on hypersomnia research and how to cope with hypersomnia through the use of behavioral sleep medicine, as well as other fabulous topics. Listed below are the speakers and their topics.

 SPEAKERS AND TOPICS

Isabelle Arnulf, MD

Double-blind drug studies in France to treat idiopathic hypersomnia

Richard Bogan, MD

The long and winding road from drug discovery to FDA approval: participating in clinical trials

Michel Lecendreux, MD

What does hypersomnolence look like in children and adolescents?

Jason Ong, PhD

How to live with hypersomnia today: incorporating behavioral sleep medicine in the treatment of central disorders of hypersomnolence

David Rye, MD, PhD

What are the latest developments in research on idiopathic hypersomnia?

Lynn Marie Trotti, MD, MSc

Information is power! Contributing to the Registry of Central Disorders of Hypersomnolence at CoRDS

Q&A

Available only to those who attend the meeting in person. We will not be streaming this portion of the program.

As of today, rooms are still available at the Embassy Suites Hotel, 1420 Stout Street, Denver, CO. Call 303.592.1000 or go on line to www.denverdowntown.embassysuites.com to reserve your room.

Copy the following link onto your browser to see where this fabulous conference will be held http://www.hilton.com/en/hotels/content/DENESES/media/pdf/en_DENESES_denesmeetings.pdf

Posted in: BeyondSleepy, Conference, Hypersomnia, idiopathic hypersomna, Kleine-Levin syndrome, narcolepsy, SomnusNooze

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Put Your Napping Skills to Work and Win Prizes!

If, like me, you have hypersomnia, I’m sure you’re no stranger to napping wherever it’s convenient: in class, at a stoplight, under your desk, in a library, in a corner at the bookshop, at a table in the cafeteria, in an empty conference room… this is the reality for so many of us. Heck, as a child, I mastered napping on the mat outside my shower and nappingeventually transitioned to actually napping IN the shower before school. My mother couldn’t figure out what was taking me so long and why our water bill was so high. (Of course as an environmentally responsible adult, I feel terrible about all of that wasted water.)

Having finely honed our napping skills, we now have the opportunity to put them to great use and win some pretty cool prizes. Arianna Huffington’s Sleep Revolution has launched an Instagram contest called “Where Do You Nap?” To enter, simply:

  • Post a picture on Instagram of your favorite napping spot.
  • Include the contest’s TWO MANDATORY HASHTAGS#SleepRevolution & #Contest.
  •  To help raise awareness of hypersomnia, please also include the hashtag #BeyondSleepy. 

Eighteen people will win Marriott gift cards and a voucher for round-trip travel on Jet Blue. Drawings will take place on various dates, and only legal US residents are eligible to win prizes. To check out all of the rules and more information on prizes and how to enter the contest, visit http://ariannahuffington.com/contest-rules

By Jennie Murray

Posted in: Awareness, BeyondSleepy, Hypersomnia, idiopathic hypersomna, Instagram, Kleine-Levin syndrome, narcolepsy, Social Media, SomnusNooze

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Calcium-dependent Pathway Helps to Regulate Sleep Duration

Background

How do our brains control when we go to sleep and when we wake up? Previous studies have tried to answer this question, but, despite years of research, our understanding of this process is incomplete. Therefore, the goal of this study was to identify the elusive mechanisms underlying the control of sleep.

Who were the researchers and what did they do?

Dr. Ueda and colleagues at the University of Tokyo constructed a computer model (called computational modeling) of a neuron (a type of cell in the brain) during sleep to predict what pathway(s) might be responsible for sleep regulation. They then manipulated the proposed pathway in mice to test if the computer model was correct. Dr. Ueda and colleagues employed cutting-edge techniques to either remove the proposed pathway gene products from mice using genetic engineering (called knockout mice), or block the proposed pathway gene products using drugs (called pharmacologic inhibition). The authors then measured how these experimental manipulations of the proposed pathway in mice impacted sleep.

What were the results of the study?

This study revealed that the proposed pathway from the computational model does indeed control sleep duration in mice. Seven genes involved in the pathway emerged as having effects on sleep duration, out of a total 21 examined. The identified genes are involved in the regulation of a calcium-dependent pathway in neurons. Interestingly, changes in this calcium-dependent pathway can increase or decrease sleep duration.

What are the authors’ conclusions?

The authors conclude that this calcium-dependent pathway helps to regulate sleep duration. Future research in this pathway may help uncover the “missing switch between sleep/wake cycles.” This crucial research will lead to a better understanding of normal sleep function, in addition to associated sleep and psychiatric disorders. 

 

Tatsuki F, Sunagawa GA, Shi S, et al. Involvement of Ca(2+)-dependent hyperpolarization in sleep duration in mammals. Neuron. 2016;90(1):70-85.

A video overview of this research is available from the authors at https://www.youtube.com/watch?v=W4NrSa1R4mU

 

 

Conference rectangle Image
Learn about the latest hypersomnia research on June 12th at the Hypersomnia Foundation’s regional conference, Beyond Sleepy in the Mile High City. Scientists will share findings from their recently completed clinical trials and other ongoing studies, lead us on a journey through the drug discovery and approval process, and help us to cope with the daily struggles of hypersomnia. You will also learn how your future participation in the registry can help to solve the puzzle of hypersomnia.

Order your $25 ticket on line to join us in person in Denver or wait until June 1 to sign up for a live Internet stream of the conference, brought to you free of charge through the generous support of Balance Therapeutics, Inc., and Flamel Technologies, SA.

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What Is It Like to Participate in a Clinical Trial?

“I don’t want to do it,” I said to my mom as we entered the elevator. “Let’s just go talk to them,” she replied to my dismay. I didn’t want to be there. I didn’t want to have hypersomnia. I didn’t want to do a clinical trial—it sounded so exam roomscary and so unknown.

When we entered the office though, it was not a scary place. Everyone working there—the doctors, clinical coordinators, and nurses—were all so incredibly friendly. They were so excited to enroll people in the trial. They took all of the time we needed and answered our long list of questions. They went over every detail with us and explained the whole process. My mind on participating in the clinical trial suddenly began to change.

I decided to enroll, but, even after agreeing to it, I still had my doubts. Was it really worth the time? Was it worth not being on any other medications? Was I really going to make a difference?

Having now successfully completed the trial I can honestly tell you that YES, it was worth it! A million times over. I believe my participation did make a difference, and I am hopeful that my results will help clear the path for newer, more-effective medications than the ones we currently have.

Have you ever thought about participating in a clinical trial? Maybe you haven’t because you’ve had some of the same concerns I had. Maybe you are fearful because you just don’t know what to expect. I hope that by sharing my experience I might encourage you to take the plunge. 

During the trial you will have a set schedule to follow. Knowing this, I worried about how it might interfere with other things that were already on my calendar. The team worked with me and helped me plan my calendar out so that I was able to follow the protocol dates and also be free for Thanksgiving, my sister’s graduation, and other visits with family and friends, and my trial was completed by Christmas!

About every other week, I went to the clinic for a visit. This consisted of a quick physical, completing surveys, and usually a blood draw and urine sample. This may sound like a pain—doctors’ appointments are usually not fun, so why would you want to sign up for even more?! They did not seem like doctors’ appointments at all! I looked forward to these days because I got to go see everyone at the office who quickly did not seem just like my doctors, nurses, and coordinators, but as my friends. I was excited to let them know every week how I was doing because they genuinely cared and wanted to help find a medicine that would help me just as much as I wanted it.


The worst part of the whole process was the sleep studies. Nighttime sleep studies are a piece of cake! 
Hook me up and I am right asleep. But daytime sleep studies (technically called Multiple Sleep Latency Tests or MSLTs)—ugh! For wired upanyone with hypersomnia who has experienced a daytime sleep study, I am sure that you can agree with me that they are a certain form of torture! Not being able to sleep when our bodies so badly want to—horrible! But it was worth it.

Throughout the entire process, the team was very helpful. They answered phone calls and emails from me with questions at all hours of the day. They check up on you and always let you know that they are there for you.

I will not tell you that it was easy. There were times when I wanted to quit, and it is a commitment that takes some time. You will have a set schedule to follow. You will have some overnight and all-day sleep studies. You will have clinic visits and diaries to complete. But it sounds much harder and much more time consuming than it really is! I promise!

The best thing about being in the clinical trial is that yes, even me, one sleepy head who didn’t think she could make a difference, did. Whether this medication is a miracle drug or a complete bust, I helped with knowing that. I helped in studying hypersomnia and in someday finding medication or even a cure for hypersomnia. When I was completely grumpy and mad from not being able to sleep at a daytime study or my veins were a bit bruised from blood draws, I only had to remind myself of this to keep going. Hypersomnia changed my life. It took finishing college away from me for the time being. It has taken friendships and changed my social life. It tests me daily and has pushed me mentally and emotionally. But it cannot take away hope and it cannot take away the fight to find medicines and one day a cure that will give us all our lives back. Being in this trial was a way for me to show this. No matter how many hours a day I need to sleep or how tired I am, I can take the time and make the commitment to participate in the trial because every person enrolled is a huge step forward for all of us.

Meghan Mallare
Roanoke, VA

 Conference rectangle Image

Learn about the latest hypersomnia research on June 12th at the Hypersomnia Foundation’s regional conference, Beyond Sleepy in the Mile High City. Scientists will share findings from their recently completed clinical trials and other ongoing studies, lead us on a journey through the drug discovery and approval process, and help us to cope with the daily struggles of hypersomnia. You will also learn how your future participation in the registry can help to solve the puzzle of hypersomnia.

Order your $25 ticket on line to join us in person in Denver or wait until June 1 to sign up for a live Internet stream of the conference, brought to you free of charge through the generous support of Balance Therapeutics, Inc., and Flamel Technologies, SA.

 

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Connect at the Conference

connect

Building on last year’s successful conference, the Hypersomnia Foundation will once again host a number of prominent clinicians and medical researchers to speak at our meeting in Denver on June 12th!

“Beyond Sleepy in the Mile High City” will feature dynamic speakers on topics such as recent clinical trials, coping with hypersomnia, IH issues related to children and teens, and more.

Perhaps just as important, this gathering at the Embassy
Suites in Denver is an opportunity to connect. “It’s a relief,” said one conference attendee last summer, “just to be in a room with people who understand. I don’t need to explain or defend my hypersomnia symptoms. It’s wonderful!”

Who has supported you as you cope with hypersomnia? Is it someone you expected would be there for you, or was it someone else – someone who surprised you by reaching out to offer support?

Treat yourself to a day in Denver – surround yourself with compassionate peers, and hear renowned researchers discuss the latest developments in hypersomnia.

DID YOU KNOW — one day soon, you could play an important role in future hypersomnia research!  The Hypersomnia Foundation is developing a patient registry that will launch in the coming months. Once the registry is up and running, you can help researchers find clues to hypersomnia and determine new directions for research, just by answering questions about your symptoms. Find out more on June 12th at “Beyond Sleepy in the Mile High City” – at the Embassy Suites in Denver, Colorado.

Tickets are limited.  To purchase, visit http://www.hypersomniafoundation.org/2016-hypersomnia-regional-conference/

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This is IH

Most of my friends know I have idiopathic hypersomnia (IH) – it isn’t a secret. And most have heard me talk about the challenges I face because of this neurological disorder. They know I struggle every day to get out of bed. And I don’t mean it takes me a minute to fully wake up – I literally do not obtain wakefulness. Ever. I may look awake but my brain is constantly encased in fog, often struggling to remember even the simplest of things.

They’ve heard me explain IH as the equivalent of a “normal person” being awake for 48 hours, falling asleep, and then having someone wake them an hour later. That is my reality. Every. Day.

They’ve listened as I’ve shared that IH is a close cousin of narcolepsy – except that many narcoleptics regain wakefulness after a nap.

And they’ve heard me say that there are no FDA-approved medications for IH, let alone a cure. Most folks with IH, including myself, have fought to get insurance approval to cover medications that are only FDA-approved to treat narcolepsy. Even with coverage, just one of my prescriptions costs over $500 a month. And there’s a stigma that comes along with taking these medications – most of them are highly controlled substances. I’ve been through almost every narcolepsy medication out there and I can tell you the side effects aren’t any fun, either. From dropping tens of pounds in a matter of weeks on Adderall to falling asleep and smashing my head in to the wall on Xyrem, it has been a wild ride. That’s why awareness is so important – we desperately need research and funding.

Everything I’ve written so far is part of my “open story,” and this is usually where I stop and tell them it’s okay. I’m not dying, I have a great support system, an amazing neurologist, I’m successful in my job, still working full-time, sometimes even managing to be a mother and wife. I smile. And then I change the subject. Because, let’s face it, the topic is a total “buzzkill” and nobody wants to hear the truth any more than I want to talk about it.

But today, for one day, I’m keeping it real. As difficult as it is, and whether anyone wants to hear it or not, I’m releasing the truth about what IH means for me and those around me…

IH is a lonely, lonely path. It’s difficult to form deep friendships because I don’t have the energy it takes to be a good friend. I know I’ll eventually let the other person down, so I keep everyone at arm’s length. I sometimes even turn from my family, usually as a way of trying to protect them from me.

IH means my son will always be an only child. The other choice is to stop my medications and sleep 20 hours a day – no, that is not an exaggeration. I would have to leave my sweet son without a mother for at least a year. And we would never get that time back. To me, that really isn’t a choice. I love my son too much to choose any other life over his.

IH means depression and agitation that can strike at any moment. I sometimes can only lie in my bed and cry – like I did crying womanthis weekend and like I’m doing now. But it’s more miserable when I want to lie in bed and cry but can’t. Like when I’m at a social gathering (which isn’t very often) and have to run to the bathroom to hide until I can stop the tears from flowing. Or when I’m on a conference call at work. I’m a VP at a major corporation and I adore my job and the team I work with – crybaby isn’t exactly the image I want to portray. Thankfully, I can usually feel these moments coming and can almost always make a clean getaway before they hit. Why is that important? Because many people see tears as weakness. And if there is one thing I am not – it’s weak. What I am is absolutely exhausted.

IH means my ten-year-old asks me almost every day if I’m okay. How do I explain to my child that I’ll never be okay? How do I get him to understand he did nothing wrong and that I’m not going to bed to try to get away from him? How can I shelter him from this? How can I show him how much I truly love him when my eyes just want to close? Better yet – how can I possibly hide it all from him and trick him into thinking I am not sick? The answer to every one of those questions is simple. I can’t.

IH means my husband has it rough, too. That man is a saint and does so much for me and our son. And I just don’t have much to give him in return. I love him dearly and, yet, he really gets the short end of the stick. He gets the leftovers – any tiny portion of energy I have left at the end of the day is his. Unfortunately, I usually have nothing left long before that time comes.

IH means a lot of grieving. And, oh my goodness, the guilt. The wondering about what could have been – how things might be different without IH. Surely I’d be a better mother. A better wife. A better daughter. A better sister. A better niece, a better aunt, a better friend. A better person, a better me.

But that’s just it – there isn’t a better me. There is only me. This is my path.

This is IH.

 

Lydia Smith, Lake Wylie, SC

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Join Us for the 2016 Hypersomnia Foundation Regional Conference: Beyond Sleepy in the Mile High City!

Join the Hypersomnia Foundation for our first regional conference  “Beyond Sleepy in the Mile High City,” on Sunday, June 12, 2016, from noon to 5:00 pm MDT SN-Imageat the Embassy Suites Hotel in downtown Denver or via live Internet stream.

You spoke and we listened! Your feedback after the 2015 Hypersomnia Foundation conference led us to create a different conference experience for 2016 to better meet your financial and geographic needs. We have simplified the program, focused on idiopathic hypersomnia, reduced the cost, and changed the location. And, we will be streaming the conference live via the Internet for those who can’t join us in person.

Registration for the meeting in Denver is now open. Seating is limited, so reserve your ticket today for only $25! Click here to order your ticket or go to https://2016hypersomniaconference.eventbrite.com/

Registration for the video stream will open on June 1, 2016, so mark your calendar and visit the website to sign up. Thanks to the generous support of Balance Therapeutics, Inc., and Flamel Technologies, SA, the live video stream will be free of charge; however, registration is required.

What hasn’t changed? We have again gathered acclaimed clinical and scientific experts to share the latest understanding and treatments of hypersomnia! The following list is confirmed, and we anticipate adding a few more sessions to the program in the coming weeks.

  • How to live with hypersomnia today: incorporating behavioral sleep medicine in the treatment of central disorders of hypersomnolenceJason Ong, PhD, Rush University Medical Center, Chicago
  • Double-blind drug studies in France to treat idiopathic hypersomniaIsabelle Arnulf, PhD, MD, Pitié-Salpêtrière University Hospital Institute for Brain and Spinal Cord. 
  • The long and winding road from drug discovery to FDA approval: how you fit into the picture—TBD
  • Information is Power! Contributing to the Registry of Central Disorders of Hypersomnolence at CoRDSCatherine Friederich Murray, Chair, Board of Directors, Hypersomnia Foundation, Inc. and TBD
  • What are the latest developments in idiopathic hypersomnia research?Lynn Marie Trotti, MD, MSc, and David Rye, MD, PhD, Emory University

Because several meetings are taking place at the same time in Denver, hotel rooms in the immediate area of our conference may be quite expensive. However, many lower-priced rooms are available in the greater Denver area. For this reason and because hotels required that we reserve a minimum of two nights to set aside a block of rooms, the Hypersomnia Foundation will not be reserving room blocks at any hotels. We will have space at the Embassy Suites hotel for folks to hang out Sunday morning beginning at 10 am, so come early and meet up with your friends, old and new.

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National Sleep Awareness Week | March 6-13 | #beyondsleepy

Beyond-SLeepy

During National Sleep Awareness Week, which begins this coming Monday the Hypersomnia Foundation would like to feature your stories and your experiences as a person with idiopathic hypersomnia.

We want to showcase how idiopathic hypersomnia affects your life in ways other than simply sleepiness. Share your stories and experiences by sending us a message on Facebook with a tweet-long version (140 characters) of what it means to you to be ‪#beyondsleepy, or send us a link to a personal vine video. Then check back next week to read and share these stories!


Beyond-Sleepy-Profile-2

Change your profile picture for National Sleep Awareness Week
and let the world know you are ‪#beyondsleepy.

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A United Effort to Fuel Research on Hypersomnia

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A patient registry specific to hypersomnia has been a goal of the Hypersomnia Foundation (HF) since its incorporation in 2014. A patient registry houses information about a group of people with a medical condition, disease, or disorder that is collected in a standardized way. Registries are a rich resource of data that provides health-care professionals and researchers with first-hand information about people with certain conditions that can be probed to generate new ideas about the cause of disease, its natural history, best practices, as well as defining unmet clinical needs.

In 2015 the Hypersomnia Foundation partnered with Sanford’s Coordination of Rare Diseases (CoRDS) to create a “disease-specific” hypersomnia registry. With the counsel, input, and dedication of a task force made up of physicians, sleep medicine professionals, researchers, and other volunteers, the Hypersomnia Foundation began the complex task of creating a comprehensive registry specific to central disorders of hypersomnolence (CDH): idiopathic hypersomnia, narcolepsy types 1 and 2, and Kleine-Levin syndrome.

We are currently piloting the Hypersomnia Foundation’s questionnaires through a focus group. The focus group’s feedback will be reviewed and incorporated into the final version of the questionnaires and launched through CoRDS.

A future issue of SomnusNooze will provide details on how you will be able to include your hypersomnia relevant health information into this registry.

Feel free to share the images in this post by visting here! Share with friends on social media!

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