Hypersomnia Foundation

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The Hypersomnia Foundation at the World Sleep Congress in Prague

The Hypersomnia Foundation (HF) is thrilled to announce its attendance at the World Sleep Congress (WSC), hosted by the World Sleep Society, October 7 to 11, 2017 in Prague.

The Congress is well attended by world clinical and scientific sleep medicine experts. Board members Diane Powell and Catherine Page-Rye will be at the meeting to represent the Hypersomnia Foundation and the hypersomnia community.

Prague

Historic Prague is the site of the World Sleep Congress meeting.

HF will have a nonprofit exhibition booth with printed materials about the work of the Hypersomnia Foundation, information about the hypersomnia registry at CoRDS, and more.

The HF is grateful to the WSC for making it financially feasible to lease exhibit space for the purpose of increasing awareness about IH and the works of the foundation. (Note: HF donations will fund the exhibit only. HF Board members have volunteered to fund their own travel and expenses.)

Why is the Hypersomnia Foundation attending the WSC?

“This historic meeting in Prague brings together for the first time the best of sleep medicine with individuals from remote and populated parts of the world and members of major sleep societies.” (Dr. Richard Allen)

Part of the Hypersomnia Foundation’s mission is to build greater awareness of idiopathic hypersomnia, and that includes increasing awareness among physicians. As a gathering of sleep medicine professionals from around the globe, this meeting is a fantastic opportunity for HF to focus on this part of our mission.

The World Sleep Society was very recently established, bringing the World Association of Sleep Medicine (WASM) and World Sleep Federation (WSF) together, and it represents both individual sleep professionals and professional sleep societies of individual countries and regions.

The World Sleep Society’s mission, below, illustrates how well this organization and the coming conference overlap with the HF’s mission and goals:

The fundamental mission of the World Sleep Society is to advance sleep health worldwide.

World Sleep Society fulfills this mission by promoting and encouraging education, research, and patient care throughout the world, particularly in those parts of the world where the practice of sleep medicine is less developed.

* The World Sleep Society acts as a bridge between different sleep societies and cultures, supporting and encouraging worldwide exchange of clinical information and scientific studies related to sleep medicine.

* The World Sleep Society fosters development and exchange of information for world-wide and regional standards of practice for sleep medicine.

Why is a meeting in Prague significant for idiopathic hypersomnia?

Roth

Prague is the city where physician Bedrich Roth first coined the term “idiopathic hypersomnia.”

Prague is the birthplace of Dr. Bedrich Roth (1919-1989), the first to describe idiopathic hypersomnia. Read more about the history of Dr. Roth’s seminal work on IH that appears at the end of this article.

Will hypersomnia be included as a topic in the World Sleep Congress meeting?

The answer is YES!

Two physicians from the Hypersomnia Foundation’s medical and scientific advisory boards** are scheduled to present. In addition, a Czech physician who collaborated extensively with Bedrich Roth will address hypersomnias in a keynote speech.

* Soňa Nevšímalová, MD, Charles University (Czech Republic)

Her topic:
Central Hypersomnias Through the Eyes of Time.

An additional symposium will comprehensively review the latest advances in understanding, diagnosing and treating idiopathic hypersomnia, derived from large series of patients studied in tertiary referral centers.

* Symposium: “Idiopathic hypersomnia: a neglected disorder”

Isabelle-Arnulf-Medical-Advisory-Board-Member-Hypersomnia-Foundation

Isabelle Arnulf, MD

Chair: I. Arnulf, France**

Speakers: I. Arnulf, France;**
K. Sonka, Czech Republic;
D. Rye,** United States;
G. Mayer, Germany

* A daylong course touching on aspects of sleep medicine and research will include a discussion of IH by D. Rye,** United States.

david-rye-scientific-advisory-board

David Rye, MD, PhD

“This course will integrate research and clinical practice, bringing together basic science and clinical advances, putting together the best of a ‘year in review’ and a ‘basic science/methods’ update for the sleep physician.” The span of topics should include technology, controversial areas, and recent (2-3 years) literature. The course will aim to provide a substantial sweep across multiple topic areas, nearly a data blitz, and reach into areas outside the traditional sleep journals but of direct relevance to the practice and science of sleep medicine. The course will be on Sunday, October 8.

HF Board members will be providing updates from the conference on Facebook, Instagram (HypersomniaFoundation) and Twitter (@HypersomniaNews). Be sure to check them out – October 7-11.

*******

For further reading on the history of Bedrich Roth and IH:

Following are excerpts from Soňa Nevšímalová’s chapter, “Idiopathic Hypersomnia, Sleep Medicine: A Comprehensive Guide to its Development, Clinical Milestones, and Advances in Treatment,” pp 223-228:

“The first author to identify the clinical differences between narcolepsy and other types of hypersomnia was Bedrich Roth, a Czech neurologist, neurophysiologist, and sleep researcher. In 1956, he published a detailed description of difficulties in awakening – sleep drunkenness, recognized later as a leading clinical symptom of idiopathic hypersomnia. He identified sleep drunkenness as a symptom (inertia connected with prolonged nocturnal sleep), as a syndrome (characterized by patients suffering from prolonged nocturnal sleep, marked difficulty awakening, and daytime sleepiness), and as an independent nosological entity.

In that paper he described 20 patients with sleep drunkenness mostly of the independent form (11 patients). The disease usually began in younger age (between 15 and 33 years); the patients often had positive family history (5 out of 11 families) and showed features of depression. The most characteristic symptom consisted of prolonged deep nocturnal sleep accompanied by sleep drunkenness during waking and prolonged daytime naps generally lasting for 1-3 hours or more, but occasionally less….Sleep drunkenness was also noted in 6 out of 127 narcoleptic patients.”

Dr. Nevšímalová notes that Bedrich Roth proved that idiopathic hypersomnia existed beyond the city of Prague:

Around 1960 Bedrich Roth accepted an invitation from Allan Rechtschaffen to visit his sleep laboratory in Chicago and examine patients with sleep drunkenness in the USA. The birth of a new clinical entity supporting polysomnography (PSG) findings seemed rather amusing (sic) there. When Bedrich Roth arrived, everybody in the USA believed that this disease existed only in Prague. However, Roth arranged a short interview (at) the local television explaining the clinical symptoms of the disease (long nocturnal sleep with difficulty awakening and long-lasting daytime naps) and asked TV viewers for cooperation. Everybody in the Chicago team was really surprised to see, exactly then and there, the TV show lineup of people waiting to be examined by Bedrich Roth. After a clinical interview, he chose 10 patients and the first PSG findings of this ailment were published in patients with idiopathic hypersomnia who underwent PSG recording for two nonconsecutive nights…Three years later, a complete clinical description of hypersomnia with sleep drunkenness (58 cases), enriched by long-term nocturnal monitoring (9 cases) appeared in the literature giving a clear picture of this clinical entity.

Sleep drunkenness was characterized by difficulty awakening accompanied by confusion, disorientation, poor motor coordination, slowness, and repeated dozing off. Patients reported that these symptoms occurred almost every morning, and nearly all reported abnormally prolonged sleep.”

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Monica Gow of Wake Up Narcolepsy joins HF’s Regional Conference

The Hypersomnia Foundation is pleased to announce that Monica Gow, co-founder and former executive director of Wake Up Narcolepsy is joining the list of presenters at HF’s Regional Conference in Boston on June 4th.

Monica Gow is a co-founder and former executive director of Wake Up Narcolepsy (WUN).  In 2008, when her son, Thomas, was diagnosed with narcolepsy, Monica and her husband, David, co-founded WUN to increase narcolepsy awareness, education and accelerate research.  In October 2016, Monica moved from the role of executive director to a member of the WUN Board of Directors.   Under Monica’s leadership, WUN quickly moved from a local nonprofit organization to a recognized national and international organization offering a trusted resource for physicians, people with narcolepsy, their families and other agencies in the sleep space.  She has been the WUN Boston Marathon team captain for eight years and personally completed the Boston Marathon four times for Wake Up Narcolepsy, exceeding her fundraising goal each time.  She has two other children, Caroline and Joe, who have been involved with the organization since inception.  Prior to serving the narcolepsy community, Monica gained ten years of work experience in the insurance field in companies such as The Paul Revere Insurance Companies and Tufts Associated Health Plan, and is a certified elementary teacher.  Monica’s mission will always be to improve the lives of people living with narcolepsy.

The title of Monica’s talk: The Importance of Participating In a Registry

Speakers already scheduled include Dr. Lynn Marie Trotti of Emory University and Georgia disability attorney Anjel Burgess. Dr. Trotti will provide a clinical update on the field of IH, and the CoRDS patient registry. Ms. Burgess will discuss how workers with IH should prepare to “Stay Ahead of IH” on the job. In addition, HF Board Member Celia King will moderate a discussion on managing IH at college featuring Mary King, EdD, and two college students, Olivia G. Robbins and Jessamine Griewahn-Okita. Kate Kaplan, PhD of Stanford University will review ways that therapy can help individuals with hypersomnia manage symptoms and lead active, full lives.

The conference takes place in Boston on Sunday, June 4th in the Johnson Building of the Boston Public Library, Rabb Lecture Hall, from 12:30 – 4:30 p.m. Optional social event planned for Saturday June 3rd include a trolley tour of the city (tickets $25) and a casual “meet and greet” evening.

The conference is free, and can also be viewed via livestream.

For more information, and to register for the conference or the livestream: http://www.hypersomniafoundation.org/2017hfrc/

For tickets to the sight-seeing trolley tour on June 3rd: Get Tickets Now

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World Sleep Day: Battling the Symptoms of Idiopathic Hypersomnia

 

 

World Sleep Day, an annual event, is a call to action by delegates from around the world to raise awareness about the many burdens of sleep problems and their prevention and management. This year WSD falls on Friday, March 17, 2017, and the slogan is “Sleep Soundly, Nurture Life.”

While this slogan aligns with many sleep disorders that are modifiable and manageable with the help of a sleep specialist encouraging good health, exercise and proper diet, there is unfortunately a class of central disorders of hypersomnolence (CDH), including idiopathic hypersomnia (IH), that is especially complex and more difficult to diagnose and treat.

On this World Sleep Day 2017, the Hypersomnia Foundation is working to raise awareness about IH, a chronic and often debilitating neurologic disorder, by releasing a summary of a recent review article about CDH. This summary is intended to make current research about these disorders more accessible to the public, and it is part of an ongoing series of journal article summaries provided by the Hypersomnia Foundation to increase awareness of IH and the related CDH.

Read the Article Review Here!

In a society where feeling tired is the norm, it can be difficult to comprehend the devastating impact of a malady in part defined by excessive daytime sleepiness. For people with idiopathic hypersomnia, a full night’s slumber has no effect on easing the insatiable need to sleep. The associated severe sleep inertia and mental fogginess make it extremely difficult for people with IH to hold down jobs, remain in school, maintain marriages, and fully engage with their family and friends.

As one person with IH insightfully described it, “I am like a soldier on a daily mission; I fight to stay awake and alert, but I lose the battle and retreat to bed.” The Hypersomnia Foundation is working to help those with IH win more battles. Together, let’s get #beyondsleepy!

 

A Short Bio of the HF

The Hypersomnia Foundation, Inc. (HF), established in 2014 as a public nonprofit in the USA, received its IRS 501(c)3 determination letter that same year. As an all-volunteer organization, the HF uses 100% of donated funds to support its mission of improving the lives of people with idiopathic hypersomnia (IH) and related disorders by advocating on their behalf, providing support, educating the public and healthcare professionals, raising awareness, and funding research into effective treatments, better diagnostic tools, and, ultimately, cures for the debilitating conditions that comprise IH.

The reach of the HF is international, although the vast majority of our constituents are in the United States. Presently there is a serious unmet clinical need for people with hypersomnia (PWH). Not only are approved or even universally effective treatments not available, but lack of recognition that the symptoms of hypersomnia comprise a neurologic sleep disorder leads to a delay in diagnosis and years of needless suffering. As one prominent sleep researcher recently said, “People with hypersomnia are the most underserved population in the entire sleep community. They are veritable orphans, lacking even the most basic needs of recognition, let alone validated diagnostic tools and effective treatment.” The emotional, vocational and financial implications of the undiagnosed and untreated physical symptoms can have a disabling impact. The HF was established to address these issues.

HF core beliefs include the following:

• All PWH deserve full and proper diagnosis and treatment.
• Optimal diagnosis and treatment derive from better knowledge.
• All of the causes of hypersomnia can be discovered and properly treated.

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Article Review: Khan Z, Trotti LM. “Central Disorders of Hypersomnolence: Focus on the Narcolepsies and Idiopathic Hypersomnia.”

 

HF FOUNDATION - OverlapArtboard 3

 

This article reviews three central disorders of hypersomnolence (CDH), which include narcolepsy type 1, narcolepsy type 2, and idiopathic hypersomnia. The main symptom patients experience in all three of these disorders is excessive daytime sleepiness (EDS), which cannot be explained by other medical conditions or by not getting enough sleep.

Article: Khan Z, Trotti LM. “Central Disorders of Hypersomnolence: Focus on the Narcolepsies and Idiopathic Hypersomnia.” Chest. 2015 Jul;148(1):262-73. doi: 10.1378/chest.14-1304.
Link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4694150/pdf/chest_148_1_262.pdf
Note: Terms in italics are defined in the glossary below.

 

Symptoms (See Table)

Even though the names for narcolepsy type 1 and narcolepsy type 2 sound similar, they are now thought to be quite different disorders. Narcolepsy types 1 and 2, as well as idiopathic hypersomnia, show overlapping symptoms. Nearly all patients with narcolepsy type 1 experience cataplexy (the sudden loss of muscle tone in response to a strong emotion, often when hearing or saying something funny). These patients have difficulty with not only staying awake during the day but also with staying asleep during the night. It is also very common for patients with narcolepsy type 1 to experience sleep paralysis and hallucinations.

On the other hand, patients with narcolepsy type 2 do not experience cataplexy, but also have difficulty with daytime wakefulness. Just as in narcolepsy type 1, it is also common for patients with narcolepsy type 2 to experience sleep paralysis and hallucinations.

Patients with idiopathic hypersomnia have difficulty with daytime wakefulness, and they do not experience cataplexy.  Conversely, to narcolepsy type 1, patients with idiopathic hypersomnia do not have problems with staying asleep during the night and only sometimes experience sleep paralysis and hallucinations. They also commonly experience sleep drunkenness.

 

Prevalence and Pathophysiology (Contributing Factors)

The prevalence of narcolepsy type 1 is 0.025-0.05% of the world’s population, whereas the prevalence of idiopathic hypersomnia is not presently known. Both narcolepsy and idiopathic hypersomnia usually first occur when patients are in their teens to 30s.

Patients with narcolepsy type 1 have low levels of hypocretin (also called orexin). Hypocretin is a substance produced in the brain that is involved in regulating many processes, including sleep, feeding, stress response, and reward. These low hypocretin levels are probably due to both environmental exposure and inherited genetic factors. Getting an infection may also cause narcolepsy to develop. For example, narcolepsy became three times more common in China after an outbreak of the H1N1 flu virus.

Although several studies have investigated factors that may contribute to the development of narcolepsy type 2 and idiopathic hypersomnia, it is currently unknown whether environmental exposures or genetic factors contribute to these disorders.

 

Diagnosis

Three months of EDS symptoms are necessary for a diagnosis of all three central disorders of hypersomnolence. For narcolepsy type 1 to be diagnosed, the patient must show either or both of the following: (1) they must have cataplexy, fall asleep in an average of eight minutes or less during naps on a daytime sleep study (MSLT), and enter into rapid eye movement (REM) sleep for at least two out of five naps during this sleep study, and/or (2) have low hypocretin levels.

For narcolepsy type 2 to be diagnosed, patients must also fall asleep in an average of eight minutes or less and enter into rapid eye movement (REM) sleep for at least two out of five naps during the MSLT. They must also not have cataplexy, have normal (or unknown) hypocretin levels, and their symptoms must not be explained by any other causes.

For the diagnosis of idiopathic hypersomnia to be made, patients must not have cataplexy, must enter into REM sleep fewer than two out of five naps during the MSLT, and their symptoms must not be explained by any other causes. Additionally, they also must show either or both of the following: (1) they must fall asleep in an average of eight minutes or less during the MSLT, and/or (2) they must sleep at least 660 minutes (11 hours) per day (either in a 24 hours sleep study or in a week of at-home monitoring).

 

Treatment and Conclusions

The main goal of treating patients with all three central disorders of hypersomnolence (narcolepsy types 1 and 2 and idiopathic hypersomnia) is to relieve EDS. There are several medications approved by the US Food and Drug Administration (FDA) to treat narcolepsy. There are none, however, approved by the FDA to treat idiopathic hypersomnia, so the medications approved for narcolepsy are often used “off-label” to treat these patients.

One of these medications, modafinil, has been shown to help patients with idiopathic hypersomnia. Modafinil is unlikely to be abused, but it can cause several unpleasant side effects, like headaches and nausea. Other medications used to treat the central disorders of hypersomnolence include amphetamine stimulants, such as methylphenidate (Ritalin) and dextroamphetamine. These can also help decrease EDS, but they have associated cardiovascular and psychiatric side effects. Several other medications are also used to treat the central disorders of hypersomnolence (including sodium oxybate and antidepressants), and other new therapies are currently being developed.

Further studies are necessary to develop better diagnostic tests and treatment, especially for patients who do not respond well to medication. Additional research is also important to better understand the underlying causes of these disorders.

 

Glossary:

Excessive Daytime Sleepiness (EDS): ““The inability to stay awake and alert during major waking episodes of the day, resulting in periods of irrepressible need for sleep or unintended lapses into drowsiness or sleep.” (1)

Sleep drunkenness: “A prolonged state after awakening in which motor functions return before full awareness or there is partial return of both.” (1)

Rapid eye movement (REM) sleep: “One of the four stages of sleep. During REM sleep, the eyes move rapidly while closed and dreams occur (2).”

MSLT: The multiple sleep latency test (MSLT) measures how quickly you fall asleep in a quiet environment during the day. The MSLT typically consists of five scheduled naps, each nap opportunity lasting 20 minutes, separated by two-hour breaks. During each of the nap opportunities, you lie in bed in a darkened quiet room and try to go to sleep. The time that it takes you to fall asleep is called the sleep latency. You will be allowed to sleep for a maximum of 15 minutes during each opportunity (You will be awakened if you don’t wake up on your own). If you do not fall asleep within 20 minutes, the nap trial will end.

References:

American Academy of Sleep Medicine. International classification of sleep disorders: diagnostic and coding manual. 3rd ed. Westchester, IL: American Academy of Sleep Medicine; 2014.)

  1. https://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0023519/

 

 

 

 

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2017 #BeyondSleepy in Boston

Hypersomnia Foundation Regional Conference on June 4th

The Hypersomnia Foundation (HF) board is finalizing the program for its 2017 Boston Regional Conference. We will provide Eventbrite registration details in the near future via Facebook, Twitter and Somnusnooze.

Information below will help you begin making your travel plans to Boston. Read to the bottom for information on special hotel accommodations!


Conference Schedule (As always, social activities are optional):

Saturday – June 3

  • 2:00-4:00PM-Old Town Trolley Tour https://www.trolleytours.com/boston#home-section  
  • Survey responders voted the trolley tour #1 choice for our Saturday afternoon activity.  Sit back, relax and discover all that Boston has to offer by means of this sightseeing tour!  Group booking arrangements will be available through our Eventbrite once it is live, and we anticipate the per person rate will not exceed $36.00 (seating will be limited).
  • 7:30PM – Meet and Greet Game Night
  • Enjoy a casual meet and greet with light snacks and games hosted by the HF Board at the Residence Inn Boston Harbor on Tudor Wharf.This event is FREE but you will need to register once our Eventbrite is live.

Sunday-June 4

  • 1:00-4:30PM – HF Regional Conference at the historic Boston Public Library at Copley Square, 700 Boylston St., Boston, MA 02116
  • We have booked Rabb Lecture Hall in the newly renovated Johnson Building at the Boston Public Library for another fabulous regional conference featuring dynamic speakers.In this state-of-the-art facility, our outstanding speakers will cover research updates on idiopathic hypersomnia and related disorders. This year’s conference, however, will also focus on advocacy and empowerment to assist people with hypersomnia and their supporters navigate this world living with a chronic, rare disorder.

COST OF CONFERENCE ATTENDANCE – We understand Boston can be pricey. With this in mind, we have been hard at work negotiating the perfect location and space for our conference. The stars aligned and this year attendance to this event will be FREE!
Due to limited space you will need to register for the conference once the Eventbrite is live.

At this moment we are not 100% certain that Livestreaming the event will be possible, but are working diligently to identify sponsorship to help cover AV and Livestreaming costs. Watch for updates.

Hotel Accommodations – For Saturday night, June 3rd, The Residence Inn Boston Harbor on Tudor Wharf has offered a special group rate of $289.00 USD per night (plus tax) for a studio suite.   All rooms include complimentary breakfast and in-room high-speed internet access.  These discounted rooms are limited and we cannot stress enough to book early!

This Residence Inn has generously agreed to offer this same rate for a limited number of rooms for Friday (June 2) and Sunday (June 4) nights as well.

To make a reservation guests can either call 800-331-3131 to the central reservation team (be sure to mention the Hypersomnia Foundation room block) or book online through this link:

Book your group rate for Hypersomnia Foundation

With specific hotel questions please contact Dory Noll at the Residence Inn,
at 617-933-5313 and she will be happy to assist you.

Details about registration for the Saturday trolley tour and the meet and greet, as well as for Sunday’s Regional Conference will be highlighted in a future SomnusNooze once program details have been finalized.

We look forward to connecting with everyone in Boston!

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Livin’ the Dream

Livin’ the Dream

Or maybe dream living? I’ve never been a morning person. Mom would drop me off at the door by my first hour seconds before the bell rang. Neighbors that I carpooled with to grade school called me Molasses. My birth certificate says Melissa. Everyone knows I will be late to EVERYTHING.

I stay up all night cleaning because that’s when energy strikes and the fog lifts. Conversely, if I choose instead to go to bed I’ll fall asleep immediately. Mornings, and just the thought of them, terrify me. No amount of sleep, hours or days, refreshes me. I used to get up at the same time dreamwith no alarm. Now, if I hear it, it’s like a dream fragment that I’m never sure actually happened. My dad calls me every morning to help wake me up. These conversations have the same wispy, unreal quality.

The physical act of leaving the bed while my brain is wrapped in rolls of bubble wrap is the single most difficult task I have ever faced. And I’ve had 3 hip replacements and had my first surgery at 18 months old. In fact the state of my brain when trying to wake reminds me of the last second before anesthesia steals you or the first moments it lets you go. Once I leave the bed, conversation is not an option. The words may float around in my head but they ain’t coming out. So I do the hair and makeup thing, and I’ve realized that the act of making myself look awake helps me feel normal. Not less sleepy, just human.

I would give just about anything to wake up refreshed again. To look forward to going places and seeing people. My house used to look like Halloween or Christmas threw up in here. I can’t make myself just switch out summer candles for fall. Got meat in the freezer from March – July. Yeah I know, yikes! I haven’t cooked my family a real meal in months. And I have no appetite either. Anyone else have that?

So I float thru every day in this dreamlike fog, forgetting the thought I had a second ago, practically begging doctors to find something horrible wrong with me, desperately wanting sleep and hating it with a passion, as well as a body that seems to have turned on me, trying stimulants and wake-up meds, feeling like a loser for getting to the office at 11:30, forgetting to pay bills, not going to the grocery store, being too tired to give my cat her medicine, being overrun by laundry, telling my sister no I can’t take you to urgent care, throwing my hair up in a ponytail because I’m too tired to wash it, being suspicious of “good” days and cramming a million things into them because tomorrow is an unknown bitch that more than likely will kick my ass again.

 

Melissa Morrow

Oak Grove, MO

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Beyond Sleepy in Boston: the 2017 Hypersomnia Foundation Regional Conference

SAVE the DATE

June 3 and 4, 2017

bpl

We have booked Rabb Hall at the Boston Library for another fabulous regional conference featuring dynamic speakers on Sunday afternoon, June 4, 2017. In this completely renovated, state-of-the-art, yet historic facility, our outstanding speakers will cover all of the latest research on idiopathic hypersomnia and related disorders. In addition, we have planned social events on Saturday afternoon, Saturday evening, and Sunday morning to connect with friends old and new.

Boston has so much to offer, and we would like your input regarding what you would like to do. Please respond to the survey linked here (https://www.surveymonkey.com/r/BeyondSleepy2017) to provide your feedback. Completing this very brief survey is not a commitment that you will attend the conference, but we would like to get an idea about numbers of people to anticipate, as well as to set aside an adequate room block and select your preferred social events.

Note that the costs quoted in the survey are estimates of actual costs, since pricing can change depending on the number of people who will book a hotel room and how many people will participate in the activities. Please complete this short survey by October 19, 2017. Registration will open on November 15th.

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Service Dogs – Part 2: Different Types and What They Do

Many people are surprised to learn there are more than a dozen different specializations for service dogs. There are diabetic alert dogs, severe allergy alert dogs, visual assistance dogs, hearing dogs for the deaf, wheelchair assistance dogs, psychiatric service dogs, brace/mobility support dogs, medical alert dogs, seizure assistance dogs, and dogs for autism, post-traumatic stress disorder (PTSD), and more.

According to the Americans with Disabilities Act (ADA, 1990), a dog is considered a “service dog” if it has been “individually trained to do work or perform tasks for the benefit of a person with a disability.” A disability is a “mental or physical condition which substantially limits a major life activity.” Examples include the following:

  • Caring for one’s self
  • Performing manual tasks
  • Walking
  • Seeing
  • Hearing
  • Speaking
  • Breathing
  • Learning
  • Working

Other disabilities may not be visible.

  • Deafness
  • Epilepsy
  • Psychiatric conditions
  • Diabetes

To be considered a service dog, the dog must be trained to perform tasks
directly related to the person’s disability. Some service dogs perform two or more functions for their disabled handler, such as a brace / mobility support dog and a seizure assistance dog. There isn’t a clear way to classify all types of service dogs, nor is classification particularly important under the ADA as long as the dog is a service dog. The dog’s type, function, title, or classification is usually left up to the dog’s handler. The following are some ways in which service dogs can assist their handlers.

Allergy Alert: The service dog can alert its handler to life-threatening allergens that may be in the area, especially tree nuts, gluten, or shellfish.

Autism Assistance: The service dog can help to calm or ground an individual who has autism via tactile or deep pressure stimulation. The dog may also assist in teaching life skills, maintaining boundaries, or finding a “runner.”

Mobility Support / Wheelchair: A brace/mobility support dog works to provide bracing or counterbalancing to a partner who has balance issues due to a disability. Many brace/mobility support dogs also retrieve, open/close doors, or do other tasks to assist in day-to-day life or in an emergency. Dogs may also assist their partner by retrieving dropped objects, opening doors, retrieving the phone, helping with transfers, or doing anything else their partner may need.

Diabetic alert: These dogs can alert their handler to dangerous or potentially deadly blood sugar highs and lows. Many dogs are trained to call 911 on a special K-9 Alert phone if their partner cannot be roused.

Hearing Assistance: Hearing assistance dogs can alert their deaf handler to environmental sounds, including, but not limited to, alarms, doorbells, knocking, phones, cars, or their name.

Medical Alert: These dogs are trained to alert their handler to dangerous physiologic changes. such as spikes or drops in blood pressure, hormone levels or some other parameter or to recognized an identifiable symptom.

Psychiatric Service: Psychiatric service dogs assist their handler with a psychiatric disability such as anxiety, depression or PTSD via specific trained tasks.

Seizure Response: These dogs respond to their handler’s seizures via trained tasks. The dog may retrieve medication, utilize deep pressure stimulation to end a seizure early, fetch a nearby person to help or call 911.

Visual Assistance: Also know as guide dogs, these animals help their visually impaired or blind handler to navigate the world.

untitledKimberly Brenowitz is the Master Trainer with Animals Deserve Better, Inc. and Paws for Life in Marietta, GA. She can be reached at adb@animalsdeservebetter.com.

The first part of this series is available at http://www.hypersomniafoundation.org/serviceanimals-pt1/

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Midyear Recap

Can you believe that 2016 is almost half over? It’s been a very busy year at the Hypersomnia calendarFoundation, where volunteers have been hard at work establishing new programs and bringing you the latest information on the central disorders of
hypersomnolence—primarily idiopathic hypersomnia, but also narcolepsy and Kleine-Levin syndrome. In case you’ve missed anything, here is a brief summary.

  •  Attendance at Beyond Sleepy in the Mile High City far exceeded our expectations—we anticipated 50 people, planned for 75, and hosted 81 in Denver! Keeping our fingers crossed that the Livestream version would be well received, we hoped for 500 to 750 people to tune in. Wow, more than 1100 people viewed the program live, with an additional 235 having watched the recording in the past week. Not surprisingly, slightly more than 70% of people watched from the US. However, folks from Australia, Norway, France, the UK, and seven other countries also participated. Thanks to a volunteer, we were able to take questions from anyone who had a twitter account, and most of the questions were answered during the Q&A session, which was ultimately included in the Livestream broadcast. If you missed the program, please sign up at http://www.hypersomniafoundation.org/2016-hypersomnia-regional-conference-register/ and watch as many times as you like or invite your family and friends to participate.
  • You are reading our 100th issue of SomnusNooze, the Foundation’s weekly free Celebrating_100_issueelectronic newsletter. Today, it landed in 1282 inboxes, which is up by more than 25% since the first of the year. If you have friends, colleagues, classmates, teachers or family members who would benefit from learning about the latest research regarding hypersomnia or understanding from reading what it is like to live with hypersomnia, encourage them to subscribe to SomnusNooze at http://www.hypersomniafoundation.org/
  • We will be implementing a new feature in SomnusNooze called Ask the Doctor. Members of the Medical Advisory Board have graciously offered to answer your general questions about central disorders of hypersomnolence. Of course, they won’t be able to answer specific questions regarding individual treatments or conditions. Please send your questions to AskTheDoctor@hypersomniafoundation.org
  • After years of endless revisions and input from researchers, physicians, people with various forms of central disorders or hypersomnolence, and CoRDS personnel, we have launched the Hypersomnia Foundation Registry at CoRDS. This registry will form the backbone of many future research projects to be conducted by scientists from throughout the world. Your participation in the registry will garner new insights into the disease processes and help scientists better understand the differences among the various hypersomnia disorders. Please sign up today at http://www.sanfordresearch.org/cords/ to help solve the puzzle of hypersomnia. For more information, please visit the June 14, 2016, issue of SomnusNooze.
  • This month, the Hypersomnia Foundation was the recipient of a grant from the Trip Advisor Charitable Foundation to increase awareness of hypersomnia. We are most appreciative of these funds, which will allow us to update our website and enhance our social media presence. 
  • The Hypersomnia Foundation has sought the input of a broad swath of the hypersomnia community in various ways over the past six months. With the launch of the PAAC, the People with Hypersomnia and Advocates Advisory Council, we have developed a means to boost communication with our constituents. In addition, last month’s survey, to which 192 people responded, is the first of what will be many surveys to elicit your input. You gave us a clear mandate that research and increasing awareness among the public and physicians are your priorities for the coming the year.

Not only do the members of the Board of Directors work tirelessly on your behalf, but they also all make the Hypersomnia Foundation a priority in their charitable giving. However, we can’t do it alone. Although we understand that not everyone has the means to simply write a check or transfer an appreciated stock, the continued success of the Hypersomnia Foundation is dependent upon your financial support. We offer you here several additional creative ways to support our continued efforts to meet these challenges you have set ourt for us.

Company Matching Gifts – Several donors have employers who match their gifts to the Hypersomnia Foundation – even a small donation makes a big difference when you double the opportunity to support people with hypersomnia!

Recurring donations through credit card or PayPal – A small monthly gift certainly adds up over time and is easy when you set it up to occur automatically. You don’t have to remember to make that payment, but what you can remember is the impact you will have on the hypersomnia community through your support.

Employee-Advised Grants – We received the grant from the Trip Advisor Charitable Foundation when a dedicated Hypersomnia Foundation volunteer nominated us late last year for her company’s giving program. We were invited to submit a proposal and make a presentation, which resulted in the aforementioned funds to increase awareness of hypersomnia among the general public and physicians. Perhaps your company has a similar program and a simple inquiry can make a world of difference

Friends and family helping friends and family – Many of the donations that we receive are in honor of someone who has hypersomnia. Talk about spreading the love!

AmazonSmile – Do you shop ANYTHING Amazon? If you designate the Hypersomnia Foundation as your charity of choice at amazon.smile.com, Amazon will donate a percentage of your eligible purchases to the Hypersomnia Foundation at absolutely no cost to you. Last year we were received several hundred dollars from AmazonSmile. Every bit counts!

Bravelets – A supporter set up a shop through Bravelets, where $10 from each item purchased is being donated to the Hypersomnia Foundation. When she set up the campaign, the supporter sent us this note, “Welcome! I came across this wonderful website a couple weeks ago. There are so many great fundraisers already started, but I noticed there was not one for hypersomnia yet! As someone who was diagnosed with hypersomnia, I know how hard it can be to be brave in the face of this frustrating and sometimes confusing illness. Please join me in spreading the word and helping the Hypersomnia Foundation.” https://www.bravelets.com/bravepage/hypersomnia-awareness-bravelets

Do you have a creative way of giving to the Hypersomnia Foundation? Please let us know, and we will gladly share it with others in an upcoming edition of SomnusNooze.

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