Hypersomnia Foundation

Archive for 'Awareness'

SPECIAL SOMNUSNOOZE ALERT!!

URGENT: Let’s Get #BeyondSleepy campaign matching donations for the next 24 hours to raise funds now for research and awareness of hypersomnia.

For the next 24 hours all donations to our giving season campaign will be matched, up to $5000!

The Pillows and PJ’s challenge has taken off, and we are more than halfway toward our goal of raising $20,000 by December 31st!

Supporters from as far away at the Netherlands and New Zealand have donated and contributed photos, then challenged friends and family to do the same. Check out our Facebook page to see the gallery of fun and creative photos, like these of Board Members Cat Rye and Diane Powell:

diane-pjscat-pjs

 

 

 

 

 

 

 

 

DON’T WAIT, PLEASE DONATE NOW WHILE WE HAVE AN OFFER TO MATCH YOUR GIVING (you don’t need to take a PJ photo to donate!). DONATIONS can be made here: http://www.hypersomniafoundation.org/2016givingseason/

To see all the PJ photos, check us out here: https://www.facebook.com/Hypersomniafoundation/
Thank you, as always, for your wonderful support of the Hypersomnia Foundation and our campaign to get #BeyondSleepy! Campaign continues through December 31st.

Posted in: Awareness, BeyondSleepy, Research

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The Blight on My Daughter’s Life

I gave birth to my daughter at 7:28 pm after 33 hours of labor. I was worn out, so I relinquished my baby to the care of the nurses within a couple hours to get some sleep. I didn’t see Cait again till 6:00 am. And, for the first year and a half of her life, if I put her down at 7:00 pm I knew I wouldn’t hear from her again till 8:00 the next morning. In retrospect, I wonder if it was an omen of what was to come.

Cait settled into normal sleep-wake patterns as a toddler. Toward the end of grade school, though, I remember that, if I took us out to dinner, she would invariably complain of being tired. I kept having to tell her not to lay her head on the table in restaurants.HPIM0292.JPG

Through her adolescence, I learned the hard way that it was best not to say anything to her early in the morning. “Not a morning person” was the understatement of the decade.

Cait completed her first bachelor’s degree on schedule and stayed on to get another BA and earn a teacher’s certificate, having settled on a career path late. It was during that program that the wheels came off. She lost motivation. Her sunny disposition disappeared. She earned the BA but couldn’t complete the certificate. After about 5 months living with a friend and making no headway with a job hunt, she moved in with her step-dad and me.

She landed a job. I thought she’d gotten her feet under her. But then she just tanked—spent all her time in bed except for when she had to work. It looked like depression to me. She found a counselor. Eventually she agreed to take antidepressants. Her mood lifted, but the fatigue didn’t go away. Her doctor checked her B-12 and her thyroid and screened for Lyme disease. She was sent for a sleep study and diagnosed with mild sleep apnea. She invested in a CPAP machine and used it faithfully. It didn’t help. She kept going back to the sleep study site asking why, and they would ask, “Do you meditate? Do you exercise? How much protein are you eating?”

Five months later, she thought she might have had a mini seizure. She was referred to a neurologist who happened to be a sleep specialist. The pre-appointment questionnaire drilled down on questions about sleep, and Cait answered them fervently. On her first visit, this doctor quickly resolved the question she came with and then said, “But I think you have another problem and it isn’t sleep apnea.” It was another month before a sleep study with MSLT confirmed it, but, when we did the Internet search that night, we knew he was right. Idiopathic Hypersomnia.

I hate this blight on my daughter’s life. I’m her alarm clock. I pack her lunch daily and make sure she has a good dinner every night. She doesn’t have energy for anything except her job. What kind of life is this? She’s planning now to move back to Illinois where she has a cadre of friends and a beloved church community within a 15-minute drive radius. I want her to have a life of her own, but I wonder, “Can she pull this off? Will she have the support she needs?” How I hate this blight on my daughter’s life!!

Ellen Swinford

Germantown, MD

Posted in: Awareness, idiopathic hypersomna, Journey, Share the Journey Stories

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Idiopathic Hypersomnia – A Turtle Going Uphill Through Molasses in January

Share the Journey Stories

Words escape me. I am a reader, a writer, and a highly educated woman with multiple degrees. Eloquence is high on my list of valued traits. Communication is one of my strengths, and something I’ve always been commended for. And yet, words escape me. I stutter, I stumble, I am tongue-tied. It’s like trying to grab water in your fist.

That is part of what it feels like to have brain fog, a symptom of multiple chronic illnesses, including my idiopathic hypersomnia. You can’t find the words you are looking for, even everyday words. But I am not stupid. I do not have a low vocabulary. I have a Bachelor of Arts in English; communicating in a clear and concise manner was something I was trained to do. But words escape me. Not just once in a while. All the time.

Brain fog is just one aspect of IH. It isn’t even the biggest aspect, nor the most important. However, it matters because how can you convey what it is like to have constant all-consuming fatigue if words escape you?

I would say that my fatigue is a “maelstrom,” or a “torrent” within and surrounding me, but the connotations of such descriptions bring up thoughts of fast and wild disasters. Fatigue is much more subtle and slow. It is not the quick death of a bullet to the brain. Fatigue is more like walking through thick, high mud. Like swimming through honey. Like drowning in an ocean. Like being in a bog, surrounded by impenetrable fog. Like a turtle going uphill through molasses in January. It is all of these things simultaneously. It is wearing a lead straitjacket while trying to escape drying cement. It is slow, and it eats you alive from the inside. It is the thick, heavy, slow, drained, helpless, hopeless feeling.

Imagine dealing with all of that, day in and day out. Now experience all of that while trying to be a competent part of society. Subtract caffeine. Add heart palpitations and a minimum nightly requirement of eleven hours of sleep. The hardest part of your day is waking up. The second hardest is getting out of bed. The third is staying awake. An eternal struggle. Stay awake. Be productive. Accomplish your tasks.

Imagine doing all your normal tasks (and they have to be done well and in a timely manner) when you haven’t slept in three days. Now imagine doing that every day. Can you? I can. Because that is what I do every day, because idiopathic hypersomnia means that I need a minimum of eleven hours of sleep in order to feel like I haven’t slept in two or three days. I cannot remember what it is like to feel refreshed, rejuvenated, and awake. It’s been years. I would, without hesitation, amputate an arm or a leg if that was the cure. Think about that.

Take all of that and tell me that fatigue isn’t debilitating. I dare you.

But you know what? No matter how many people read this, there are still going to be those that think fatigue isn’t debilitating. But life keeps going. So, just like that turtle, I will keep going, even if it is always uphill through molasses in January.

Caitlin Swinford
Germantown, MD

Posted in: Awareness, BeyondSleepy, Hypersomnia, idiopathic hypersomna, Journey, Share the Journey Stories, Social Media, SomnusNooze

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Sleep Disorders and Social Security– What You Need to Know

Social Security Disability Series: Part 2

Sleep Disorders and Social Security Disability – What You Need to Know

By Anjel Burgess, JD

Jennie has been fortunate enough to secure her short-term disability benefits. She has also hired an Attorney to assist her with the Social Security Disability application process. Although her family encouraged her to “file on her own instead of paying out of pocket to hire an attorney,” Jennie has learned throughSomnusNooze that Social Security Disability attorneys are not paid by a retainer, as many attorneys are. Rather, they work on a contingency basis, which means that Jennie does not have to pay out of pocket to get representation. For the attorney to get paid, two conditions must be met:

  1. The attorney must win Jennie’s case.
  2. Jennie must be entitled to past-due benefits (also known as back pay).

If both conditions are met, the Social Security Administration (SSA) will pay Jennie’s attorney 25% of Jennie’s back pay, up to a maximum of $6,000. Since obtaining the benefits is of the utmost importance to Jennie, she has decided that she can’t afford NOT to have an attorney. She has hired an attorney who will file an initial application for her and represent her through each step of the process.

Jennie’s attorney has explained to her that most people who receive Social Security Disability benefits have been through a three-step process and that it may take two years or more before she is approved (note that in some states, it is a 2-step process, as the Reconsideration step is eliminated). These steps include the following.

  1. Initial – Roughly 30% to 35% of applicants are approved at this level. Once SSA receives the initial application, they request medical records from Jennie’s providers. Once the SSA receives Jennie’s medical records, SSA will have its own physician or psychologist (or both a physician and psychologist) review the medical records to give their opinion as to what limitations they believe that Jennie has, as well as the impact of those limitations on her ability to work. This would also include a review of the opinion of Dr. Wonderful and any other of Jennie’s treating physicians. Oftentimes, SSA will decide that they need an outside opinion in making their decision. If this occurs, the SSA may require that Jennie be examined by an independent physician or psychologist (at SSA’s expense) who may not have an expertise in idiopathic hypersomnia. This independent professional then prepares a report that summarizes her or his observations and professional opinion. If the case is denied initially, Jennie can appeal.
  2.  Reconsideration – Roughly 7% to 10% of applicants are approved at this level. At the Reconsideration step, SSA obtains updated medical records and completes another internal review of Jennie’s file to see if any new evidence would result in a favorable outcome. It is possible that the SSA may send Jennie out for an independent examination at this stage as well. Again, if Jennie is denied, she can appeal.
  3. Hearing – Roughly 50% to 55% of the remaining applicants are approved at this level. This is the stage at which most people are awarded benefits, particularly after attending a hearing in front of an administrative law judge. The hearing is the opportunity for Jennie and her attorney to present the big picture to a judge. The big picture includes all medical records and testimony from Jennie herself. Jennie’s attorney will also have the opportunity to make oral and written arguments on Jennie’s behalf.

The common theme in each step of the process is medical records. Medical records are vital in a disability case because they can provide objective support for an individual’s complaints. For Jennie, her medical records tell the story of a very symptomatic individual who tried multiple medications but could only be productive for about 3 hours throughout the day. Her doctor ruled out many other conditions, and was able to confirm the diagnosis of idiopathic hypersomnia via a polysomnogram and Multiple Sleep Latency Test. Jennie’s medical records provide proof that she has idiopathic hypersomnia and authenticate her symptoms, which are reasonably due to idiopathic hypersomnia.

If you, too, are ready to file for Social Security Disability or have been denied at any step in the process, contact a qualified Social Security Disability Attorney to assist you with the process.

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

Have you joined the registry yet?
A patient registry is a collection that is established to collect standardized information about a group of patients who share a common condition or experience. In the case of the Hypersomnia Foundation Registry at CoRDS  (Coordination of Rare Diseases at Sanford), the people who participate have one of the central disorders of hypersomnolence: idiopathic hypersomnia, Kleine-Levin syndrome, or narcolepsy (type 1 or 2). Becoming part of the registry is easy and it could help solve the puzzle of hypersomnia! Simply go to http://www.sanfordresearch.org/cords/ and click on the ENROLL NOW button.

A patient registry is a collection that is established to collect standardized information about a group of patients who share a common condition or experience. In the case of the Hypersomnia Foundation Registry at CoRDS (Coordination of Rare Diseases at Sanford), the people who participate have one of the central disorders of hypersomnolence: idiopathic hypersomnia, Kleine-Levin syndrome, or narcolepsy (type 1 or 2). Becoming part of the registry is easy and it could help solve the puzzle of hypersomnia! Simply go to http://www.sanfordresearch.org/cords/ and click on the ENROLL NOW button.

 

Watch Beyond Sleepy in the Mile-High City

Denver6

Were you one of the more than 1250 people who joined us at Beyond Sleepy in the Mile-High City, the Hypersomnia Foundation’s Regional Conference, in person and online on June 12, 2016? If not, you can still watch the conference in its entirety by registering at http://www.hypersomniafoundation.org/2016-hypersomnia-regional-conference-register/. If you previously registered and missed any part of the program–or simply want to watch it again–please go to http://www.hypersomniafoundation.org/2016-hypersomnia-regional-conference-live/. The video will only be up for two more weeks!

 

Posted in: Action, Awareness, BeyondSleepy, Conference, CoRDS Registry, Education, Hypersomnia, idiopathic hypersomna, Kleine-Levin syndrome, narcolepsy, News, SomnusNooze, SSDI

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Solving the Puzzle of Hypersomnia One Piece at a Time

The Hypersomnia Foundation Board of Directors is thrilled to announce the launch of the Hypersomnia Foundation’s Registry at CoRDS (Coordination of Rare Diseases at Sanford). Whether you have idiopathic hypersomnia, Kleine-Levin syndrome or narcolepsy type 1 or 2, please enroll in the Registry today to help solve the puzzle of hypersomnia. Your information will help researchers comprehend the journey that people with hypersomnia travel in their search for a diagnosis and will answer many other questions, including the symptoms that you experience, which may help to distinguish among these disorders, and the treatments that have and have not worked for your symptoms. Registration is simple (the second figure below describes the process). Simply go to http://www.sanfordresearch.org/cords/ and click on the ENROLL NOW button. Your answers to the Registry questions will help researchers design better diagnostic tools and more effective treatments and, eventually, find a cure. CoRDS personnel are available to help you, if needed, during the registration process. They can be reached at cords@sanfordhealth.org or 1 (877) 658-9192.

 

What is a Registry? A patient registry is a collection that is established to collect standardized information about a group of patients who share a common condition or experience. In the case of the Hypersomnia Foundation Registry at CoRDS, the people who participate have one of the central disorders of hypersomnolence: idiopathic hypersomnia, Kleine-Levin syndrome, or narcolepsy (type 1 or 2).

What is a Registry?
A patient registry is a collection that is established to collect standardized information about a group of patients who share a common condition or experience. In the case of the Hypersomnia Foundation Registry at CoRDS, the people who participate have one of the central disorders of hypersomnolence: idiopathic hypersomnia, Kleine-Levin syndrome, or narcolepsy (type 1 or 2).

cords process

CoRDS Registration Process

 

Posted in: Action, Awareness, BeyondSleepy, CoRDS Registry, Education, Hypersomnia, idiopathic hypersomna, Kleine-Levin syndrome, narcolepsy, SomnusNooze

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Five More Days!

Only five more days until the 2016 Hypersomnia Foundation Regional Conference!!!

Are you joining us in Denver or tuning into the live Internet broadcast? Either way, we understand that you might have a few last-minute questions, so we’ve put together a list of recently asked questions.

1. My schedule just changed, and I’ll be able to make it to Denver after all. Can I still buy a ticket?

Yes, you can, but we have only a few tickets left (At the time of publication, we had 4 tickets left). To purchase a ticket to attend Beyond Sleepy in the Mile-High City in person, please click on this link or purchase a ticket here http://2016hypersomniaconference.eventbrite.com/

2. I have purchased my ticket for Beyond Sleepy in the Mile-High City. I would like to get together with other people with hypersomnia. Where can I find them?

You’re in luck! We have created three separate opportunities to get together with other conference attendees. On Saturday evening, June 11, at 6 pm, we will gather in the Atrium Alcove on the fourth floor of the Embassy Suites Hotel, 1420 Stout Street. This informal gathering will include a cash bar, games, and camaraderie. On Saturday, we will be reserving tables so that we can all sit together for breakfast beginning at 7:30 am in the Embassy Suites Hotel (breakfast is not included). Head to the meeting room (Crestone) on the third floor of the Embassy Suites Hotel beginning at 10 am, where, once you have completed the sign-in process, you can just sit and chat or make plans with others gathered there to go out for lunch before the conference begins at noon.

3. What time will Beyond Sleepy in the Mile-High City get underway?

We will be starting promptly at noon, Mountain Daylight Time. People from around the world will be tuning in, so please calculate your viewing time based on GMT-6.

4. Will we have any food?

Well, this answer depends on how you are participating. We will be serving light refreshments at 2:00 pm at the Embassy Suites Hotel in Denver, underwritten in part by a grant from Pavilion Pharmacy. If you are watching via the Internet, you are on your own for snacks.

5. I am coming to the conference in Denver, but I know that I will have trouble remembering everything that the speakers are saying. Can I watch the Internet streaming later to refresh my memory?

YES!!! You can buy a ticket for the Denver conference and register on the Hypersomnia Foundation’s website to watch the streaming video. Once you have registered for the streaming video, you will be able to view the event as many times as you would like between June 13 and July 11, 2016. We are also working on creating a permanent link to the videos, but we don’t want to make any promises at this point.

6. I live in Australia. The Hypersomnia Foundation Conference, Beyond Sleepy in the Mile-High City, will be live at 4 am in my timezone. Are there any other options to watch?

YES!! Take a look at the response to the previous message.  Please complete the registration on the Hypersomnia Foundation’s website (http://www.hypersomniafoundation.org/register/) and you will be able to view Beyond Sleepy in the Mile-High City as many times as you would like between June 13, and July 11, 2016.

7. My sister would like to watch the Beyond Sleepy in the Mile-High City, but she is not on the Hypersomnia Foundation’s mailing list. Can she still watch the program?

YES!! She is more than welcome to join us. The purpose of this program is to educate anyone who would like to learn more about hypersomnia. From teachers and professors to employers, parents and friends, spouses, and children, doctors and pharmacists, the program will help people understand the full impact of hypersomnia on the lives of those affected. Registration is open to anyone with a streaming device and an Internet connection. Please widely share this link (http://www.hypersomniafoundation.org/register/) to the registration page and encourage as many people as possible to take part.

We hope this answered any questions you may have had and we look forward to your attendance at the conference! Please direct any additional questions you may have to conference@hypersomniafoundation.org

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

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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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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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We Sold Out!

We Sold Out!

The Hypersomnia Foundation is extending heartfelt appreciation to the Hypersomnia Foundation community for the huge success of the 2015 Hypersomnia Foundation Conference, Building Our Future Together.  Thank you to all the people with hypersomnia and all of their supporters who attended this year’s conference.  This year’s conference theme was selected to support the members of our hypersomnia community by Building Our Future Together.  A BIG thank you to all of our wonderful volunteers.  We could not have held this event without all of your help and support.  You all worked so hard in support of this event, and its success is due entirely to your efforts.

Thank you to our three amazing Keynote speakers, Dr. Isabelle Arnulf, Dr. Lynn Marie Trotti, and Dr. David Rye.  We all learned so much from your expertise.  To our breakout session speakers, we send you our deep appreciation.  Attendees were excitedly sharing what they learned in your sessions with others throughout the day.   To our Medical Advisory Board members who attended and facilitated sessions at the conference, we greatly appreciate all you do to support the Hypersomnia Foundation and the hypersomnia community.

Congratulations to all of our award recipients!  We greatly appreciate each and every one of you, and we are so proud of all you have accomplished this year!

  • Hypersomnia Foundation 2015 Awareness Award: Dr. Sanjay Gupta
  • Hypersomnia Foundation 2015 Researcher of the Year: Dr. Lynn Marie Trotti
  • Hypersomnia Foundation 2015 Volunteer of the Year: Diana Kimmel
  • Hypersomnia Foundation 2015 Advocate of the Year: Beth Boyce
  • Hypersomnia Foundation 2015 Supporter of the Year: Michael Sparace

Thank you to all of our 2015 Hypersomnia Foundation Conference sponsors, donors, and scholarship angels.  Without your support, we could not have facilitated such a wonderful event for our community!

Gold Level Sponsors:

  • Arise
  • Flamel Technologies
Silver Level Sponsors:
  • Pavilion Pharmacy
  • Emory Woodruff Health Sciences Center

 

The 2015 Hypersomnia Foundation Conference, Building Our Future Together, was completely SOLD OUT!  We had over 245 attendees spanning 4 countries and 28 states.  We had people with hypersomnia, supporters, medical professionals, attorneys, scientists, educators, advocates, and researchers in attendance this year.  We had two Physician Round Table sessions filled with physicians from across the country, all talking about hypersomnia.  It was an exciting day filled with learning, sharing, collaborating, and networking.  Take a look at some of the pictures and a video from the conference below.

 

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                 2015-hypersomnia-foundation-conference-registration

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 Watch the 2015 Hypersomnia Foundation Conference Video Below!

Take the Flumazenil Shortage Impact Survey!

The Hypersomnia Foundation is documenting the effects of this medication shortage on the hypersomnia community. If you have been prescribed flumazenil, please respond to the survey. Your responses will be anonymously tallied and used to inform the public and those in the medical and pharmaceutical industries of the effects of such a shortage on the lives of those diagnosed with hypersomnia.

Take the Survey Here

 

We Want Your Feedback!

If you attended the 2015 Hypersomnia Foundation Conference, please complete this survey to give us feedback on how we did.

https://www.surveymonkey.com/s/HFConference2015

If you did not attend the 2015 Hypersomnia Foundation Conference, we want to know why.  Please complete this survey to let us know.

https://www.surveymonkey.com/s/GXKZ5P5

Posted in: Awareness, Conference, Education, idiopathic hypersomna

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