Hypersomnia Foundation

Mark Your Calendar, Set Your Alarm, and Register Today

June 12, 2016, is the date. Noon Mountain Daylight Time (MDT) is the time. And, as promised, registration for the alarmLivestream feed of Beyond Sleepy in the Mile High City: a Hypersomnia Foundation Regional Conference is now  open. Thanks to the generous support of our sponsors—Balance Therapeutics, Inc., and Flamel Technologies, SA—you, your family, friends, classmates, teachers, coworkers, and anyone else you would like to invite can attend this broadcast of the event free of charge. However, you will have to provide your own refreshments during the 2:00 break.

This unique program is an opportunity for you to hear the latest research about idiopathic hypersomnia (IH), learn behavioral techniques to live better with IH, and find out how you can help to advance the science and treatment of IH by participating in research studies and the Hypersomnia Foundation registry. Have you ever had difficulty explaining IH to your friends or family members? Do your coworkers and the HR department struggle with understanding why you might need an accommodation to come in a little later or to work a flexible schedule? If so, we encourage all of the important people in your life to join you in watching, or invite them to tune in from wherever they might be to, Beyond Sleepy in the Mile High City: a Hypersomnia Foundation Regional Conference.

Registration is simple.

Anytime before noon MDT on June 12, 2016, you can register for the Livestream feed. It is recommended that you complete registration using the device that you will be using to watch Beyond Sleepy on the 12th.

Please follow these steps to register:

  1. Click on this link, or go to http://www.hypersomniafoundation.org/register/ and complete the entire registration.
  2. Select and enter a username.
  3. Enter an active email address of an account that you check frequently.online registration
  4. Select and enter a password that is a combination of at least seven letters or numbers.
  5. Enter your first and last names.
  6. Click Register.
  7. You will be redirected to a confirmation page.
  8. That’s it; you are registered!
  9. You will receive an email message containing the account information you will need if you have to manually log into the Livestream feed of the conference on the 12th. If you do not receive this email message, please check your spam or junk mail folder.

On June 12th, simply go to http://www.hypersomniafoundation.org/login. If you are using the same device with which you completed the registration process, you should be automatically logged in and redirected to the Beyond Sleepy in the Mile High City Livestream feed. However, depending on your computer settings, you may be required to log into the system manually. To do so, enter the username and password you provided during registration if prompted to do so on this login page. 


 A very few tickets are available for the in-person Beyond Sleepy in the Mile High City: a Hypersomnia Foundation Regional Conference on June 12, 2016, in Denver, CO. For more information and to register, please visit http://www.hypersomniafoundation.org/2016-hypersomnia-regional-conference.

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Sleep Disorders and Your Job – What To Do When The Writing’s On The Wall

Social Security Disability Series: Part 1

Sleep Disorders and Your Job  – What To Do When The Writing’s On The Wall

By Anjel Burgess, JD

Jennie is a 40-year-old single mother of two children who has been working for 10 years as a data entry clerk. Jennie Jennie - disabilitywas diagnosed with idiopathic hypersomnia one year ago and has been working with her doctor to try and manage her progressively worsening symptoms. Over the last year, they have tried every medication conceivable, and her current medications have her optimal productivity time at about 3 hours. Jennie has been arriving to work late, struggling to stay awake at work, and sneaking breaks throughout the day to rest and is only able to be productive for about 3 hours throughout the day. Her supervisor has found her asleep at her desk on multiple occasions, and Jennie finds that her once impeccable work product is now riddled with errors. She was recently written up for performance-related concerns, which means that, at this point, the writing is on the wall. With a family to provide for and medical treatment that is vital to receive, Jennie is concerned that she will be fired. She has consulted with her employer, and has been told that she has the following options available to her:

  1. FMLA (Family Medical Leave Act) – This is unpaid job-protected leave of up to 12 weeks for employees who have a serious health condition that makes the employees unable to perform essential functions of their jobs.
  2. Short-term disability – These benefits are often made available by the employer, but private policies are also available. Short-term disability policies provide benefits after a short waiting period of 7 to 30 days, once the insurance company has documentation that employees are unable to perform their duties. Short-term disability programs typically pay 60% of the benefit salary and may be available for 3 months to a period of years.
  3. Long-term disability – These benefits may be available through the employer or a private policy. These policies typically provide benefits after a 180-day waiting period and typically pay 60% of an employee’s benefit salary. Long-term disability benefits may be available through full retirement age.

In Jennie’s case, her best option is to apply for short-term disability, with a plan to apply for long-term disability benefits once her short-term disability benefits are exhausted. Once she leaves work to begin her short-term disability benefits, Jennie should also apply for Social Security disability benefits.

Social Security disability – Jennie is eligible for Social Security disability benefits based on her work history. Through her employer, Jennie has been paying FICA taxes, which makes her eligible for financial assistance and health insurance through Social Security disability in the event that she becomes disabled and is unable to work for a year or more. Since the process for Social Security benefits typically takes two years to complete, it is in Jennie’s best interest to apply as soon as she stops working so that she can ensure that her financial support from short-term and long-term disability will carry her through while she waits for the process to be completed.

If you, too, are struggling to maintain your employment due to the symptoms flowing from idiopathic hypersomnia or any sleep disorder, don’t wait until the writing is on the wall for your termination. Secure your eligibility for short-term disability and long-term disability benefits today through your employer. Contact a qualified Social Security Disability Attorney to assist you with an application for benefits.  

Anjel Burgess is a partner/attorney at the Law Firm of Burgess and Christensen located in Marietta, GA. She exclusively practices Social Security Disability Law for adults and children, as well as the ancillary areas of Guardianships and Special Needs Trusts. By doing so, she has been able to make a positive difference in the daily lives of people who need help the most. You may reach her at Anjel@DisabilityHelpLine.com or 770-422-8111. You can learn more about her services at www.DisabilityHelpLine.com.

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Act Today and Let Your Voice Be Heard

Very recently, the Hypersomnia Foundation became aware of an opportunity to help shape the future of sleep research. The National Institutes of Health, the primary source of funding for medical research in the United States, has issued a Request for Information, which you can view at: https://grants.nih.gov/grants/guide/notice-files/NOT-HL-16-312.html.

The final date to submit your comments has been extended to today, May 16, 2016.Screen Shot 2016-05-16 at 12.41.44 PM

Last week, we sent an email to everyone in our database to encourage you to make your voices heard. We are urging you again to act today. Please share your hypersomnia story with the people who determine medical research priorities and allocate funds.

  • Tell them why the currently available diagnostic tools and lack of awareness about hypersomnia led to a lengthy delay in your diagnosis.
  • Tell them why research into the cause of and effective treatments for hypersomnia are so desperately needed.
  • Tell them why we need a cure as soon as possible because hypersomnia is limiting your ability to achieve your dreams, complete your education, or even provide financially for your family.

Please join your voice with ours as we fight to secure the place of hypersomnia at the top of the nation’s sleep research agenda. The Hypersomnia Foundation Board of Directors has submitted the following response, and we encourage you to send your comments and suggestions to the NIH, as you deem appropriate, at rfi-sleepplan2016@collaboration.nhlbi.nih.gov.


 

Hypersomnia Foundation Response
to the National Institutes of Health’s Request for Information:

For nearly a century, the study of sleep and its function(s) in health and disease has been principally focused within approaches that center on not enough sleep. Although excessive daytime sleepiness (EDS), cognitive dissonance, and other symptoms not surprisingly result from sleep deprivation, central disorders of hypersomnolence (CDH; e.g., idiopathic hypersomnia, Kleine-Levin syndrome,
narcolepsy type 1 [NT1], and narcolepsy type 2 [NT2]) in humans (in which EDS is often accompanied by extremes of sleep length) emerge spontaneously. Studying patients with CDH has already proven to be fertile ground for investigation, as evidenced by the discovery that loss of brain hypocretin causes narcolepsy with
cataplexy (i.e., NT1). Yet, for the other CDH, there remains a large unmet clinical need, with further research and development prime for discovery and the potential for extraordinary translational opportunities.

Symptoms of CDH can be disabling, and because, for example in NT1, they also begin in adolescence or young adulthood, are chronic, sometimes progressive, go undiagnosed or misdiagnosed for decades, and respond variably to medications.
Despite advances around NT1, the knowledge gained has not translated smoothly to
the clinical realm. Diagnoses of CDH inclusive of NT1 since 1975 have relied upon a
forty-year-old test (viz., the Multiple Sleep Latency Test [MSLT]) that is cost, time,
and labor intensive and that was born of practical necessity and subsequently
tweaked to specifically identify NT1. In 2006, two preeminent sleep researchers concluded that the MSLT yields “a large number of false-positives” and that an increased daytime propensity to REM-sleep—traditionally accepted to be the sole domain of NT1—does “not appear to have any specific pathognomonic significance.” Yet, in 2016, the MSLT remains the gold standard that drives diagnoses and all that it implies. For clinician scientists, this means, for example, how clinical trials are designed and studies of heritability are conducted. Even more so, for patients, this has enormous implications for prognosis, treatment choice, access to medication(s), and accommodations/disability status.

There are currently no FDA-approved treatments for the CDH—medication choice being limited to those for narcolepsy. Since the 1930s, conventional
psychostimulants such as ephedrine have been used to treat NT1. The majority of the current pharmacological armamentarium and drug development are similarly designed and focused upon promoting wakefulness by enhancing brain monoamines. Drugs more directly designed to replace hypocretin continue in development 16 years after the discovery of hypocretin. An alternative construct in approaching the biology and treatment of CDH has recently been proposed that appears to hold great promise for many patients. People with CDH without NT1 (i.e., hypocretin being intact) do not appear to suffer from any “loss of function” per se but, rather, a gain of function in sleep-promoting brain circuits. Thus, pharmacologic agents that antagonize the sleep-promoting and consciousness-dampening neurotransmitter gamma-aminobutyric acid (GABA), such as flumazenil, clarithromycin, and pentylenetetrazol, have either been demonstrated to be effective or are in clinical trials for CDH patients in whom traditional wake-promoting agents have not been helpful.

We advocate for initiatives to fund discovery research that translates to improve the human condition of people with CDH in whom sleep is prolonged and ostensibly persists into “wake.” Enhanced recognition and improved treatments call for greater understanding of not only the clinical spectrum of CDH and the natural history of these disorders, but also mechanistic understanding of their biological underpinnings. Diagnostic tools that are highly discriminative and designed to capture more than just EDS and an increased daytime propensity to REM sleep are an absolute necessity. CDH remain diagnoses of exclusion such that greater understanding of potential mimics—which themselves would enhance mechanistic understanding of sleep—and biomarker discovery are also high priorities. As there are numerous stakeholders in such endeavors, as evidenced in the summary provided above, the absolute need to encourage greater dialogue and collaboration among patients, patient advocacy groups, professional organizations representing sleep physicians, funding agencies, and industry cannot be understated. With increasing dissemination of knowledge through many means, not the least of which includes social media, patient consumers with CDH-like symptoms have become increasingly knowledgeable. They are acutely aware that CDH outside the realm of NT1 is not well served by current medical knowledge or practice in this realm. Accepting the status quo risks alienating the public and medical consumer.

We would, therefore, propose including a sleep neurobiologist on the NHLBI Sleep
Disorders Research Advisory Board and developing mechanisms for solicitation of
program projects and set-aside funds specifically to research hypersomnia, with requests for proposals to prioritize filling unmet clinical needs in the following areas:

R37 Javits Neuroscience Investigator Award
NIH EUREKA grants
R13 funding to support conferences
T32 grants for postdoctoral study
RFAs and more specifically RFPs
SBRI funding for better diagnostic tools

Because the breadth of scientific inquiry or line of investigation needs incredible resources and sustainability, we would advocate for funding initiatives with set-aside monies at all levels of training, including predoctoral, doctoral, postdoctoral, junior investigator, and senior investigators, and we envision promoting set-aside monies for all the Career Development K Awards for investigators with projects relevant to CDH.


 

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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.

Tickets are running out so order your $25 ticket online 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.

 

 

 

Posted in: Action, Awareness, Education, Hypersomnia, idiopathic hypersomna, Kleine-Levin syndrome, narcolepsy, News, Research, SomnusNooze

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Her

All I can say is my admiration for those that suffer with idiopathic hypersomnia (IH) is truly immense. I love an IH sufferer, and even though she fights every day just to participate and contribute, she still shares humor and kisses like smuggled chocolate drops in a dreary math’s lesson.

sleeping woman Some days you can see the drugs are in slow mo, and all you want to do is wrap your arms around her and pump her up with the normalcy of simply feeling awake. Every tomorrow brings fresh hope she will make it all the way to the end without a crippling migraine, or be slam dunked by a drooling sleep fest, stealing away her hard-earned achievements … Or worse still… a cruel and soul-destroying comment from an ignorant and narrow-minded baboon stewing in his ungrateful and wasted soup of well-being. Stupidly, he mistakes her for lazy, slow, or disconnected, having no idea that he has just had an encounter with a rare warrior—one who wins and conquers life one precious moment at a time in a world where whole years are abandoned and forgotten. She, so young, has learnt how to manage a bigger load, invisible to the untrained eye, with finite stamina, measuring routine activities carefully with brave grit and frowned-faced fortitude.

Yet, as I watch her slow drunkard-like stance, slowly mobilizing each muscle to reach vertical every morning, I no longer feel that dark despair and loss. I am now infused with hope, amused and bewildered by how love curled by pain for so long can march you back up a cranky forgiving road to welcome in our new norm. Two adult women, cradling acceptance and insistence, seesawing between the two, me and her, mother and daughter.

Anonymous Supporter

Posted in: Awareness, BeyondSleepy, Hypersomnia, idiopathic hypersomna, SomnusNooze, Uncategorized

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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.

Posted in: Conference, News, Research, SomnusNooze

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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

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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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