Hypersomnia Foundation

Author Archive

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

Posted in: Uncategorized

Leave a Comment (0) →

Communicating With Your New Doctor About Your (or Your Child’s) Rare Disorder

Note: In this article, the word “you” will be used to mean both you and your child.

You will need different kinds of doctors to help you with your rare disease. Specialists will know the most about your disease and which specific treatments are best. Many times, several specialists will be needed to help with specific parts of your disease. Doctors who treat people with rare diseases often know other specialists around the country or world and can help you find someone near your new home who is specialist in your disease. However, they are not usually the doctors who will help manage all the various parts of your care.

When you move, one of the most important new people will be your primary care doctor. This doctor will form your medical home, a compassionate, accessible, cooperative, family-centered place where you can develop a relationship and get help to coordinate your care. Most often, it will be up to the individual to find a new primary care doctor. How can you find a primary care doctor to help care for you when you have a rare disease?

It is important to know what you should consider when looking for a new primary care doctor. A good medical home works best when the doctor, their staff and you, the patient, form a team. You should feel comfortable with the doctor; be able to ask questions; have a sense the person is willing to work with you and your specialist(s), is willing to manage complex issues and coordinate care, and is open to learning about you and your rare disease. You also must be willing to be part of the team and communicate clearly and honestly with your new primary care doctor about your condition. Mutual respect will be key to building a successful relationship with your new primary care doctor. It may take several visits before you feel comfortable and develop a relationship. Sometimes you may need to see more than one primary care doctor until you find one that is best for you.

Someone with a rare disease may be a challenge for the primary care doctor. They may never have seen a person with your specific disease. You can help by providing some information about not only yourself, but also your disease. This may be a review article or reference about your disease or a website dedicated to your disease. Keep in mind that most primary care physicians have busy clinic days and are limited in the amount of time they are able to devote to each patient. It may be unrealistic to expect the primary care doctor will ever achieve the degree of in-depth knowledge about a rare disorder and the most recent research on it that you will have. The goal is not for your primary care doctor to become an expert on your specific disease (that is why you have a specialist), but to understand the problems related to the disease and be able to coordinate care with your specialist(s).

Prior to your first appointment, make copies of important documents to take with you. Consider making a binder or electronic file of important information and your own summary. Ask your previous specialist for a summary letter describing your disease, your specific problems, and your current treatments. This is very valuable for the busy primary care doctor who may not have the time to go through extensive records. These will be helpful not only for your new primary care doctor, but also any new specialists you see. You should also get a copy of your medical records from your specialists, hospitals where you were admitted, and your previous primary care doctor. A few key records you should get are the following:

  1. A copy of the specialist note when you first received your diagnosis, and the note from the most recent visit with your specialist.
  2. Copies of any tests that helped make the diagnosis—blood tests or tests on other body fluids (urine, spinal fluid, tissues remove for biopsies or operations), imaging (regular x-rays, CT scans, MRI scans, echocardiography, etc.), special diagnostic tests (lung function, sleep studies, psychological tests, etc.). If you have the actual image tests on a disc, that would be very helpful. You have rights to all your records (paper and images on disc) from all of your providers (including any hospital). Many providers do charge for copies. It is particularly helpful to get these before you move, as sometimes they can be hard to obtain later.
  3. If you have had tests after your diagnosis as a regular follow up of your disease, you should get copies of those as well.
  4. If you have had an operation or been admitted to the hospital, a copy of the Discharge Summary is essential. If possible, the Operative Notes for your surgeries are also useful.
  5. For children, a copy of the growth chart or a list of the weight, length, and head circumference over time.
  6. For children and adults, the immunization record.
  7. A list of current medications and the dose, any previous medications that were discontinued because they were not effective or caused side effects, and any allergies. Include experimental treatments, vitamins, supplements, herbal therapies, physical/occupational therapy, chiropractor—essentially anything you use to make your disease better.

The primary care doctor may not need to see all of these. You can refer to them during visits as needed.
Remember that your medical home with your new primary care doctor will be key to coordinating all other aspects of your health care. It may take time to find the right physician and home and to build an open and honest relationship. However, a good medical home, with you as the focus of the team, will help coordinate services and provide comprehensive care and ensure that you stay healthy.

Bonita Fung, MD, and Kim McBride, MD, Bexley, OH

Posted in: Journey, Share the Journey Stories, SomnusNooze

Leave a Comment (0) →

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.

Posted in: Uncategorized

Leave a Comment (0) →

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/

Posted in: Uncategorized

Leave a Comment (0) →

Wing Chun and Hypersomnia

Earlier this year, I experienced a minor miracle. After a full day of traveling and running errands, I was completely drained. The next day was a big event, and anxiety was eating at me. Would I wake up in time, would I have enough energy to be sociable, or would sleep take the reins yet again? I was faced with the option to go to sleep right then and wake up even earlier than I had planned or to get some stuff out of the way before sleep and get up as late as possible for the full day ahead. I knew that in a couple of moments my body would take any choice out of the equation, but I was still sitting upright out of sheer stubbornness and determination.

I did not have the energy to do much more than stand at that moment, but I had so much to do before I could let myself succumb to sleep. Taking another step seemed out of the question, but I could move my arms, so I started an exercise that had become a part of my daily routine. My hands followed a series of movements that comprise the beginning stages of learning Wing Chun Kung Fu, affectionately called the form, and it was not draining me like every other movement seemed to do, so I kept going.

Halfway through, my eyes opened in shock. It felt like I was waking up—not some metaphor or random realization—but actually waking up. By the time I finished, I wing_chun_single_chi_gerkwas in shock because I found that I had energy that was so distant just five minutes earlier. And for the next hour, I was able to do everything I had to in preparation for the next day. When I was done, I, not my body, was the one to make the decision to go to sleep.

The implications of what I had just experienced had my mind racing. As long as I had enough energy to stand up and start the form, I could build the energy to do more. There are still times when standing is a big ask, but I was never able to wake myself up before.

In the past, whenever my doctors would suggest exercise to help combat my tiredness, I would be so puzzled. How could I possibly think of doing anything high energy when I barely have enough energy to walk down the steps to feed myself, when I have to budget every movement in order to get anything done. The mere idea of exercise just seemed like a waste of the little precious energy that I had. But at the same time, I missed the feeling of being active like I had been in the years before hypersomnia hit me.

This past February, I reached a point where I got fed up with not feeling in control of my body. Sleep has taken so many hours from my life, and I never got a say in the matter. More than that, it didn’t let me make the most of the short time that I was awake because it was always there to pull me back under if I didn’t fight. I yearned for something, anything, to make me feel like I was in control again. I had no clue what to try—anything with cardio was out of the question.

Then I found the perfect fit by accident, or fate if you believe in that kind of thing. The movie Ip Man popped up on my “watch it again” list on Netflix, and I had just enough energy to watch a movie with subtitles. With all that had been going through my head recently, I watched this martial arts flick in a whole new light. Where before I saw a great movie with amazing action scenes, I now looked more closely at the man who was being portrayed at the center of it all. Throughout the movie, Ip Man was very tranquil and thoughtful, even in the midst of the fighting scenes, which ran counter to my interpretation of martial arts. A thought crept into my head: if he can do this while he is calm, maybe I can learn it while I am tired.

The end credits rolled, and I wrote down the style of martial arts that Ip Man practiced and taught. Wing Chun. There had to be something about the style that fostered such a temperament, one that so matched mine (albeit out of necessity at times). I immediately began to look for places in my area that taught Wing Chun… after I watched more Ip Man movies. When I visited the Wing Chun school, my suspicions were confirmed. It is a discipline that in its nature could make me feel more in control of my body, and I would be able to learn and practice it with as much or as little intensity as my energy level permitted.

When I started, I had no idea that it would translate to fueling me with energy so directly and so powerfully. My experience just two months in is a testament to how much Wing Chun is going to affect my life. As long as I have the energy to stand up and start the form, I will have the energy to do what I need to do and what I want to do. It is as if I have been walking through life thirsty in my own personal drought, rationing my energy because I had so precious little, and suddenly I have found the tools to tap into a rich well I didn’t know was beneath my feet. All because of Wing Chun!

It is my selfish hope that reading this will help you find the tools to tap into the same well of energy that I have. But no matter what, I wish you wakefulness.

Olivia Robbins, Maplewood, New Jersey

Posted in: idiopathic hypersomna, Journey

Leave a Comment (0) →

Together We WILL Solve The Puzzle of Hypersomnia

Why did the Hypersomnia Foundation Board of Directors and volunteers work for more than two years with physicians and researchers to create a hypersomnia-specific registry?

Because, as David Meeker, President and CEO of Genzyme, has said, “Creating a registry of patients is the single most valuable action a rare disease community can take!”

And this community of which Mr. Meeker speaks is all of us—it’s the young people who have recently been diagnosed with hypersomnia and it’s people who have lived with these conditions for decades. It’s also those of us who support our loved ones who struggle with hypersomnia, helping them in any way that we can to dispel the fog that enshrouds them and crying with frustration that we can’t do more.

Why are registries so important?
Registries provide critical information, particularly about rare diseases. Uncovering that information makes a rare disease easier to study, increasing the probability that a treatment can be developed.

Typically, people with rare disorders are not geographically in the same place, making it difficult for scientists and medical professionals to gather information or samples from enough patients to study a rare disorder. However, a central registry helps to overcome that geography hurdle

Why would I take the time and use my limited energy to enroll in the registry and complete the questionnaires?

  • Your participation today will provide a brighter future for tomorrow. And don’t forget, it will help to fund research through the Hypersomnia Foundation Board of Director’s $50 contribution for every completed questionnaire. Your participation will also provide concrete help to researchers looking for answers.
  • The information about the central disorders of hypersomnolence will be housed in one location, accessible to any researcher anywhere in the world whose project is valid and approved by the Sanford Institutional Review Board.
  • One of the goals of a registry is to generate a hypothesis (a scientifically based idea) about which treatments might be effective. These hypotheses can assist the pharmaceutical industry (drug companies) to know which treatments to study in clinical trials.
  • Researchers who are interested in studying new treatments for hypersomnia can contact CoRDS, and CoRDS will then contact people who have checked the box during registry enrollment that they are interested in participating in additional research.

Who is paying for the Registry?
The CoRDS registry at Sanford is funded by philanthropy. All costs pertaining to the Hypersomnia Foundation’s hypersomnia-specific registry have been covered by the generosity of a donor who contributed funds restricted to use for the Hypersomnia Foundation Registry.

What can I do?
Go to the new Hypersomnia Foundation Registry page on our website at http://www.hypersomniafoundation.org/registry/. There you will find a variety of resources.

  • A list of frequently asked questions
  • Step-by-step instructions to enroll in the Registry
  • Tips to help you enroll in the Registry and complete the questionnaires
  • A video of Dr. Lynn Marie Trotti’s presentation, INFORMATION IS POWER, at the Hypersomnia Foundation’s regional conference in June 2016.

As Dr. Trotti said, “This Hypersomnia Foundation Registry is the single most important thing people with hypersomnia can do!”

Be counted, help solve the puzzle, and complete the CoRDS questionnaires today!

Posted in: SomnusNooze

Leave a Comment (0) →

Flumazenil for the Treatment of Refractory Hypersomnolence

Background

In 2012, researchers from Emory University published a paper on their finding of a substance that increases the effectiveness of GABA in people with central disorders of hypersomnolence, particularly idiopathic hypersomnia. In that paper, they discussed their findings in seven patients who were treated with flumazenil. In 2014, Kelty et al published a case report on the use of flumazenil given intravenously to a single patient for 96 hours and then implanted under the skin. The current paper from the group of Emory researchers includes information from additional patients who were treated with a compounded version of flumazenil.

What kind of a study was this?

This was a retrospective study, meaning that the researchers did not set out ahead of time to perform a research study with predetermined goals and questions. Instead, two neurologists prescribed the medication, flumazenil, as part of their routine practice to all appropriate patients who came to their clinic. Then, at a later date, they formulated their questions.

Who were the patients and what did they do?

One hundred fifty-three patients (92 women) were prescribed flumazenil by the physicians at Emory.
sleepy
Their average age was 35.5 years. All of the patients completed the Epworth Sleepiness Scale (ESS) before starting treatment with flumazenil, and some patients completed a second ESS after starting treatments.

Who were the researchers and what did they do?

Dr. Trotti and her colleagues at Emory University reviewed the charts of their patients with hypersomnolence for whom they had prescribed flumazenil. They also reviewed the patients’ electronic correspondence and pharmacy records.

What were the results of the study?

Ninety-six of the 153 (63%) patients reported that they were less sleepy after taking flumazenil. On the other hand, 19 people reported that they were more sleepy after taking flumazenil. Among these 19 patients, nine continued taking flumazenil because the increased sleepiness was only temporarily worse right away after taking the medication or the sleepiness improved after the flumazenil dose was changed.

Before starting treatment, the average ESS score was 15.1, even among those who were taking wake-promoting agents. After starting treatment with flumazenil, the average ESS score dropped to 10.3 among the 40 people who reported improved sleepiness and who completed a second ESS.

awakeOf the 96 patients who reported that their sleepiness improved in response to treatment with flumazenil, 59 continued to take the drug long term (average, 7.8 months at follow-up). Interestingly, 72% of women reported a positive response to the drug, whereas only 48% of men had a positive response. Similarly, people who reported having sleep inertia (difficulty waking up, including grogginess or disorientation immediately upon awakening) were more likely to respond to flumazenil, as compared with those without sleep inertia (72% vs 42%).

Seventy-nine participants (52%) reported experiencing an adverse event (the most common being dizziness, anxiety, and headache), with 17 people stopping the medicine because of adverse events. Two patients had serious adverse events, and another had changes in liver function tests that resolved after stopping the drug.

What were the researchers’ conclusions?

According to the authors of this study, “In summary, our clinical experience in a large group of patients with treatment-refractory hypersomnolence demonstrates meaningful and sustained clinical response in a substantial fraction of patients. Important questions remain about optimal formulation, dosing, long-term safety, and effectiveness. Prospective, controlled studies, ideally with measurement of plasma or cerebrospinal fluid flumazenil levels, are clearly needed. However, our experience suggests the possibility of clinical use of flumazenil in carefully selected, severely affected patients lacking other treatment options.”

Trotti LM, Saini P, Koola C, LaBarbera V, Bliwise DL, Rye DB.  Flumazenil for the treatment of refractory hypersomnolence. J Clin Sleep Med 2016;ePub ahead of print.

Posted in: Flumazenil, Hypersomnia, idiopathic hypersomna, Research

Leave a Comment (0) →

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

Leave a Comment (0) →

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.

Posted in: Uncategorized

Leave a Comment (0) →

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.

Posted in: Uncategorized

Leave a Comment (0) →
Page 1 of 6 12345...»