SAVE the DATE
June 3 and 4, 2017
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.
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
Other disabilities may not be visible.
- Psychiatric conditions
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.
Kimberly Brenowitz is the Master Trainer with Animals Deserve Better, Inc. and Paws for Life in Marietta, GA. She can be reached at firstname.lastname@example.org.
The first part of this series is available at http://www.hypersomniafoundation.org/serviceanimals-pt1/
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 was 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
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!
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.
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.
Of 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.
Can you believe that 2016 is almost half over? It’s been a very busy year at the Hypersomnia Foundation, where volunteers have been hard at work establishing new programs and bringing you the latest information on the central disorders of
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.
June 12, 2016, is the date. Noon Mountain Daylight Time (MDT) is the time. And, as promised, registration for the Livestream 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:
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.