Hypersomnia Foundation

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Hypersomnia Research-Where We Are And Where We Are Headed

During the presentation by David Rye, MD, PhD titled “What are the latest developments in research on idiopathic hypersomnia?” at the Beyond Sleepy in the Mile-High City Hypersomnia Conference, he pointed out that, while on the one hand without a known biological biomarker there is a large unmet clinical need for people with idiopathic hypersomnia, on the other hand a growing awareness garnering increasing interest and recognition within the medical community is gaining momentum.

Following is an abbreviated summary of his talk prepared by Dr. Michelle Emrich.  As Dr. Rye had mentioned this is not an all-inclusive list but specific highlights of recent development in research, collaboration, and treatments of idiopathic hypersomnia:

  • In the fall of 2016 The Emory University sleep research team and collaborators anticipate applying for a newly announced FDA orphan products natural history grant that has the possibility to yield $400,000/yr of additional financial support for up to 5 years.
  • Nearly half of chronic fatigue syndrome patients meet MSLT criteria for IH. Data not yet published. Population based control MSLTs (n=1019) summarized courtesy of E. Mignot vs. CFS (n=46) from Wichita, KS (Reeves WC, et al BMC Neurol (2006); 6:41).
  • Studies of non-sleepy controls indicate that nearly ¼ (22%) are asleep by 8 minutes, which demonstrates that MSLT based criteria of ≤ 8 minutes put forward by the International Classification of Sleep Disorders (ICSD) is poor at discriminating IH from controls (i.e., it is a “poor” test in lacking specificity).
  • 71% of IH with long sleep have MSLT > 8 min (i.e. considered to be normal), showing that MSLT based criteria also have poor sensitivity for rendering a diagnosis of IH (C Vernet and I Arnulf, Sleep (2009)).
  • A “cluster analysis” (i.e., unbiased probing for the degree of commonality ofsymptoms) by Sonka, Susta and Billiard suggests that IH and Narcolepsy Type 2 (NT-2) share more similarities than differences. (Narcolepsy with and without cataplexy, idiopathic Hypersomnia with and without long sleep time: a cluster analysis.  Sleep Medicine 16(2):225-31).
  • Dr. David Plante (U. Wisconsin) is continuing his work looking at hypersomnia in affective disorders (e.g., depression and bipolar disease). Sleep propensity in psychiatric hypersomnolence: a systematic review and meta-analysis of MSLT findings.  Sleep Medicine Reviews – in press (2016).
  • Dr. Plante has a five-year K23 training grant from the National Institutes of Health (NIH). Research
    • Aim #1: to probe for deficits in slow wave electroencephalogram (EEG) activity in depression with hypersomnolence as standard sleep variables demonstrate increased sleep duration with normal efficiency in major depressive disorder (MDD) with comorbid hypersomnolence.
    • Aim #2: increased EEG slowing during wakefulness. Global reductions in pre/post sleep waking theta frequency band in MDD without hypersomnolence (relative to controls and hypersomnolent group).
    • Aim #3: Investigate slow wave induction as a treatment strategy. Subject recruitment is planned for Fall 2016.
  • Dr. Plante has also been successful in getting a strategic research award from the American Sleep Medicine Foundation (ASMF) to test the usefulness of a multidimensional assessment in improving the evaluation and treatment of hypersomnolence. Questions he’ll be looking at with this research award:
  1. Do novel objective hypersomnolence measures incorporated into routine MSLT workflows capture aspects of hypersomnolence not quantified by current standards?
  2. Is the Hypersomnia Severity Index a valid subjective measure in patients referred for evaluation of suspected CNS disorders of hypersomnolence? This is a new index he’s developed.
  3. Do novel objective measures of sleepiness and the Hypersomnia Severity Index faithfully capture improvement with treatment?
  • Dr. Lynn Marie Trotti (Emory University) also has been awarded a K23 training grant from the NIH relevant to IH and hypersomnia.
    • Aim 1: Define functional neuroimaging signatures of pathological sleepiness of different etiologies (IH vs. Narcolepsy Type 1 during WAKE). She anticipates unique signatures by disease state diagnosis in FDG-PET regional hypo- metabolism. She hypothesizes that in the resting state functional magnetic resonance imaging (fMRI) will reveal increased connectivity within what has been termed the brain’s “default mode network” (DMN) whereas portions of this brain circuit will deactivate when subjects perform a simple cognitive task (N-back). Diffusion Tensor Imaging (DTI) – decreased fractional anisotropy will also be explored. Aim 2: Brain circuits underlying the symptoms of sleep drunkenness in IH will be explored with similar imaging modalities.
  • Dr. Andy Jenkins’ (Emory University Depts. of Anesthesia and Pharmacology) research continues to move forward. Midazolam and other drugs in the benzodiazepine class exert their sedative actions via gamma-amino-butyric acid (GABA) by binding between the alpha and gamma subunits of the GABA-A receptor. Dr Jenkins and his team are attempting to decipher precisely the presumptive somnogen that contributes to hypersomnia in many IH and NT2 patients that is acting on the GABA-A receptor. They are methodically exploring the % change in small, GABA-mediated current results after making single amino acid substitutions on the alpha2 subunit of the GABA-A receptor. So far they have successfully identified how small changes dramatically influence how well GABA does its job.
  • Is somnogen bioactivity specific to IH or might it be a biomarker for other origins of hypersomnia/hypersomnolence?  The large NIH R01 grant awarded to Emory University and Dr. Rye supports studying this by comparing IH & NT2 and their spinal fluids with clinical features and spinal fluids collected from sleepy and non-sleepy sleep apnea patients, and non-sleepy controls. They are also anticipating assessing Kleine-Levin-Syndrome (KLS) patients both when in and out of their episodes of hypersomnia.

In order to help discover/define the biological pathways in which the somnogen calls “home” as well as, ultimately, the very nature/structure/chemical identity of the somnogen itself, the Emory University sleep research team is collaborating with:

  1. Dr. Nicholas Seyfried – Assistant Professor in the Emory Dept. of Biochemistry is the lead investigator applying proteomic methods to spinal fluid samples.
  2. Dr. Art Edison – A University of Georgia (U) Georgia Research Alliance scholar is the lead investigator applying metabolomics methods to spinal fluid samples.
  3. Dr. Mark Bouzyk – Founder and Chief Scientific Officer of AKESOgen – is studying genetics
  4. Dr. Gary Bassell – Chairman of Emory’s Dept. of Cell Biology – is especially interested in studying myotonic dystrophy patients (in whom hypersomnia is a prominent symptom). RNA splicing abnormalities in myotonic dystrophy cause problems with proteins derived from RNA. The GABA 2γ receptor subunit in myotonic dystrophy because of this altered splicing yields a receptor more sensitive to the effects of the sedating benzodiazepine midazolam (see above).

Genetics/Molecular Biology– Daly DD and Yoss RE A family with narcolepsy (Mayo Clinic Proceedings (1959) 34:313-319). Dr Rye spoke about this during this conference as well as at the 2015 Hypersomnia Foundation Conference.   Four generations of this family were identified. Narcolepsy Type 1 is now known not to be as heritable as the sleepiness described in this family. Only 3 of 13 (16) of these family members exhibited cataplexy. So hypersomnia/hypersomnolence, not Narcolepsy Type 1, appears to be what’s being inherited in this family. Dr Rye also showed several smaller family trees collected at Emory, in which IH, Narcolepsy Type 2, and long sleepers cluster together in families.

Toward genetic research Dr. Rye/Emory has collected $187,500 in donation commitments to begin studies of the genetic components underlying IH and related disorders.  The overall goal is to raise $250,000 to fund these preliminary studies, and using this data to position themselves to apply for larger streams of NIH or foundation funding. They are in the process of collating samples and deciding how to best assign diagnoses given the diagnostic challenges alluded to above (e.g,  IH vs. Narcolepsy Type 2 vs. long sleepers).  The team is also discussing internally and with external collaborators what best first strategies to employ (Genome Wide Association Studies (GWAS) vs. whole exome sequencing [which would be feasible and possibly more fruitful with larger families inclusive of affected and unaffected individuals]).
Most comparable GWAS studies require  ~ 1000 samples. The Emory sleep program has 825 plasma samples, 783+ DNA samples, 473 CSF samples. Including DNA samples collected since November 2015 waiting cataloging into their larger biorepository.
Also, 11 patients with repeat CSF samples have been collected under different clinical conditions, which should be very useful for determining what features are unique to wellness vs. hypersomnia by way of proteomic and metabolomics comparisons.
Very recently skin biopsies h=are being collected to derive fibroblasts from which they are then able to morph into immature brain cells to study more intensively, and in a repeated manner.

Clinical Trials & Treatments:  Pentylenetetrazol (PTZ; aka BTD-001). This is an anti-GABA-A receptor study drug with mechanism action similar to that of clarithromycin.  It is being further developed/studied by Balance Therapeutics for the treatment of cognition and memory deficits in Down’s Syndrome as well as hypersomnia/hypersomnolence in IH and Narcolepsy Type 2.  Interestingly, PTZ is still available as one ingredient (viz., cardiazol) of a cough syrup available in Italy. This is the ongoing clinical trial with the acronym of ARISE. Www.arisestudies.com is the first industry sponsored clinical trial of any treatment seeking FDA approval for treatment of IH. This trial is testing the efficacy of Pentylenetetrazol (PTZ) in a rigorous, controlled, crossover, and blinded design.  ARISE is actively enrolling patients at > 20 centers including Emory University (see the website for participating centers). This drug has a long and substantial safety record (i.e,. Phase 1 requirement of safety in humans has already been established). A small, unblinded Phase IIa study – 5 subjects (3 IH and 2 Narcolepsy Type 2) each with hypersomnia responsive to clarithromycin and/or flumazenil demonstrated very promising results. So much so that the much larger Phase IIb study is moving forward necessitating recruitment of 120 subjects (60 each with IH and Narcolepsy Type 2).

Emory’s open label experience with flumazenil continues to be promising and publication of their “open-label” experience in an initial 153 treated patients is forthcoming. The paper was accepted June 27, 2016 publication in the Journal of Clinical Sleep Medicine. Beyond this experience which is limited to those patients seen and treated by Drs. Rye or Trotti prior to January 1, 2015, it is estimated that nearly 300 patients with hypersomnia resistant to traditional treatments with wake promoting drugs have been empirically treated with flumazenil through Emory’s outpatient sleep clinic alone.  Many additional physicians outside of Emory are increasingly prescribing flumazenil to their patients.

Much has transpired since the 1950’s when Dr. Bedrich Roth coined the term “idiopathic hypersomnia” and progress will continue as we work together and tease out understanding of the causes of idiopathic hypersomnia.

Posted in: BeyondSleepy, Conference, Education, Hypersomnia, Research, 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


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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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 gammaaminobutyric 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
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.



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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Crash Course: Public School Accommodations for Children with Hypersomnia – Part 4

This is the last in a series of four articles explaining how to navigate the public school system for accommodations under a 504 plan. If you have not already done so, read part 1, part 2, and part 3 of this series first.

By Kate Pece, M. Ed.

A K-12 Idiopathic Hypersomnia Fact Sheet is being developed at this time. We hope to make it available in mid-2017 for parents and students to give to teachers, professional staff, and administrators.

Part 4: Squeaky Wheel Strategies

You completed your child’s 504 meeting and developed a plan, and, in a perfect world, your work would be finished. The reality, however, is that you may need to ensure that all teachers are aware of the accommodations and are consistently implementing them. This is especially critical if your child’s schedule changes or if a new teacher arrives mid-year. Follow these steps to make sure implementation goes smoothly.

After the 504 meeting, get a copy of the finalized 504 plan and send a brief email to the teachers and all other meeting attendees. You should thank them for their time and input and include the list of finalized accommodations. Mention that you will check in occasionally via email for quick updates on your child’s progress and how well the accommodations are meeting his or her needs. It is easier for a teacher to respond with a quick email than it is to remember to contact you regularly.

Ensure implementation by checking in with your child periodically to ask how the accommodations are working. Ask for more information if your child has complaints, but take a breath before going on the warpath. There is another side to the story, and your child may not have accurately assessed the situation. Check in directly with the teacher about potential problems with implementation. If you are concerned that there is a problem that remains unresolved after speaking with the teacher, contact the 504 coordinator. If there is still no resolution, contact the school principal.

Document all of your communication about your child’s 504 plan. To make this easier, communicate primarily via email so that everything is documented. Copy yourself on emails and save all emails from school personnel. If a conversation happens by phone or in person, follow up that day with an email to thank that person for speaking with you and to summarize your conversation. Always communicate calmly and respectfully, follow the chain of command, and attempt to resolve any problems at the lowest level possible. Copying the district superintendent on every email will not work in your favor.

Email the teachers periodically to request feedback on how the accommodations are working. Check in every three to four weeks when the plan is new. Keep your communications brief and meaningful, and don’t expect a long response in return. Your email also provides an opportunity to give positive feedback to teachers; tell them if your child enjoyed the last project, lab, or novel. Also, thank the teachers for any “extras” they may have chosen to provide, such as giving your child an additional day beyond what is required in the 504 plan for submitting an assignment.

If you encounter problems, be respectful and assertive. Make a second contact if you do not get a response within 48 hours. Always follow the chain of command if a problem escalates, and continue to be respectful. Know that, at any time, you may schedule a meeting with individual teachers and the 504 coordinator if needed. You may also request an amendment meeting if changes need to be made to the accommodations in the plan. These steps will resolve most problems if you encounter them, but, if you still have concerns, meet with a private educational consultant to determine if and how to move forward.

Your last responsibility is to prepare for the annual review. Initiate the appointment yourself approximately six weeks before the plan’s anniversary. You may get an appointment quickly, or you may have to wait, but either way, you can ensure that the meeting happens at an appropriate time. No meetings are scheduled during the summer months, and both the first six weeks and last month of the school year are less than ideal times to meet. If possible, avoid meeting the day before a holiday break or the first day back.

At least one week before the annual review meeting, collect any emails from teachers that include useful information about current accommodations. Follow the same process as you did for the eligibility meeting, but this time using the 504 plan accommodations as a point of reference. Ask teachers which accommodations are working well and which may need to be added, modified, or removed. As before, include your child in the process to maximize plan efficacy.

Kate Pece is an independent educational consultant and former 504 coordinator in Atlanta, GA. She provides services to families seeking advice about and help pursuing public school accommodations, as well as coaching services and academic support to students with and without disabilities. You may reach her at Kate@KatePeceConsulting.com or learn more about her services at www.KatePeceConsulting.com.

Posted in: Education

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Crash Course: Public School Accommodations for Children with Hypersomnia

By Kate Pece, M. Ed.
In this series of 4 articles, you will learn how to navigate the public school system for accommodations under a 504 plan. This first article gives a broad overview of initiating the process so that you may get started right away.
Part 1: 504 Primer

If your school-aged child has a diagnosis of hypersomnia, you have probably seen the impact of the disorder on your child’s academic progress. Until now, you may have had mixed results in getting the support your child needs in public school. With the doctor’s diagnosis, however, you may now request legally binding, formal accommodations under Section 504 of The Rehabilitation Act of 1973.

In brief, a 504 plan provides your child in public school with specific accommodations to “level the playing field” when your child is symptomatic. (Private schools may also write 504 plans, but most will provide accommodations without the formal process outlined in federal law.) Pursuing a 504 plan requires that you submit certain documentation and attend a meeting that includes you, your child, the 504 coordinator at the school, your child’s teachers, and possibly other school personnel, such as the counselor or school nurse.

Begin the process by asking for the name and contact information of the 504 coordinator at the school. Contact this person to request a 504 meeting and a list of the documentation you will need to provide to the school. This may be as simple as a one-page form that the school provides for the doctor to state the diagnosis and explain how it may impact your child in school.

You will need to prepare for the meeting, as hypersomnia is an uncommon disorder that school personnel may not understand. Provide a very simple and succinct description of hypersomnia and the specific symptoms your child experiences. Also be ready to explain, or have your child prepared to explain, how these symptoms have an impact on your child’s ability to learn, concentrate, take notes, study, complete classwork/homework, take quizzes and tests, and so on.

Most importantly, prepare a list of accommodations that you would like to request to help your child have equal access to learning in the school setting. An upcoming article in this series will provide more details about specific accommodations to consider. One example is for your child to receive copies of the teachers’ class notes or presentations, as mental fogginess may make it difficult for your child to take notes in class.

The key to developing appropriate accommodations is to determine ways in which your child is unable to perform at the level of his or her peers without such accommodations. If hypersomnia has no apparent educational impact (e.g., lower grades on tests due to the inability to stay alert and take good notes in class), the law prohibits the development of accommodations under a 504 plan. Accommodations are created to level the playing field, but they cannot provide an advantage that is not available to other students. Accommodations also do not maximize potential, so a “B student” performing at the level of his or her peers cannot get accommodations for the sole purpose of earning an A.

During the course of the 504 meeting, the entire team of participants will work together to develop accommodations that will work. These are documented in a formal 504 plan that is signed by all team members. It goes into effect immediately, and school personnel must provide the accommodations under federal law. The 504 plan is reviewed annually. If any new concerns arise before then, an amendment meeting may be called at any time to discuss accommodations for new symptoms or additional diagnoses.

Keep a copy of the most recent 504 plan and check in with your child to ensure that it is being followed. If there are any problems with implementation, contact the teacher first. If not resolved, contact the 504 coordinator and follow up to be sure the plan is followed.

Kate Pece is an independent educational consultant and former 504 coordinator in Atlanta, GA. She provides services to families seeking advice about and help pursuing public school accommodations, as well as coaching services and academic support to students with and without disabilities. You may reach her at Kate@KatePeceConsulting.com or learn more about her services at www.KatePeceConsulting.com

Posted in: Education, idiopathic hypersomna

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Deadline for the 2015 HFC Scholarship Approaching!

The deadline (April 25, 2015) is fast approaching to apply for the 2015 Hypersomnia Conference scholarship, but your chances of being selected have significantly improved.

Over the past week, several anonymous donors have paid for additional complementary registration tickets so that more people who otherwise might not be able to attend the conference can do so. Thanks to these donors’ generosity, we will be selecting even more people to receive scholarships for a conference ticket. If you would like to have your name entered into the drawing for free conference registration, please send an email to info@hypersomniafoundation.org with Conference Scholarship in the subject line. If you have already entered, you do not need to submit another request; you will automatically be entered to receive one of the additional scholarships.

Posted in: Awareness, Education

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University of Michigan Offers Free Sleep Course Online

The University of Michigan, through Coursera, is offering a free online course entitled Sleep: Neurobiology, Medicine, and Society starting on April 6, 2015.

Beginning with an overview of the molecular basis of sleep and covering a general review of sleep medicine, this 12-week course concludes with Dr. Thomas Roth discussing excessive daytime sleepiness and sleep need on June 13, 2015. Although the Hypersomnia Foundation’s Medical Advisory Board has not vetted the course content and we do not know what will be discussed regarding hypersomnia, the instructors are well-respected sleep researchers and clinicians. If you would like to learn more about sleep and are interested in participating in this course,

Vist https://www.coursera.org/course/sleep for more information.

Posted in: Education

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Dr. David Rye Presents at 2013 Narcolepsy Network

Dr. David Rye’s 2013 session at the Narcolepsy Network conference entitled: What’s in a Name? Understanding the Origins of the Terminologies for the Family of Hypersomnias. A fascinating examination of semantics and the signs and symptoms of hypersomnia.

Recorded by: Diana Kimmel
Edited by: Jennifer Beard
Uploaded with permission from Dr. David Rye

Posted in: Awareness, Education

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How Long Does It Take for Sodium Oxybate to Work?


According to the Narcolepsy Network, although it affects more than 200,000 people in the US, narcolepsy is estimated to be undiagnosed or untreated in 75% of people with the disorder. This lack of recognition leads to delays in effective treatment and decreased quality of life. The US Food and Drug Administration has approved a variety of drugs to treat narcolepsy-associated excessive daytime sleepiness (EDS), including modafinil (Provigil), armodafinil (Nuvigil), methylphenidate, and amphetamine. Sodium oxybate (Xyrem) has been approved to treat the EDS and cataplexy associated with narcolepsy.

Sodium oxybate has been found to be effective for most people with narcolepsy who have taken the drug in clinical trials. However, patients must find the right dose of the drug that works for them (titration to efficacy) and must be able to tolerate the drug. Sodium oxybate does not work equally well for everyone, and there may be a lag from the time a person starts taking the drug until it becomes effective. Doctors and patients may find it helpful to know the average time that it takes for people to have a good response to this drug.

Who were the researchers and what did they do?

About 15 years ago, members of the Xyrem International Study Group conducted two studies in which they examined the effectiveness of sodium oxybate. In the first, they tested three different doses of the drug against placebo in 136 patients for four weeks. For the second study, all of the patients from the first study, whether they received sodium oxybate or placebo, were invited to take the drug for a minimum of an additional 12 months; 118 chose to take part in the second study.

Dr. Bogan and his colleagues recently looked at the data from these two studies to find out how long it took for sodium oxybate to effectively treat EDS and cataplexy in these patients with narcolepsy. They used two different definitions of response (one for EDS and one for cataplexy) to determine what percentage of patients responded to treatment and the time to effective treatment. The definition for EDS response was a 20% or greater improvement on the Epworth Sleepiness Scale score. The definition for cataplexy response was at least 50% fewer cataplexy attacks per week.

What were the results of the study?

Seventy-eight percent of the patients who took sodium oxybate for both studies were EDS responders, and 91% were cataplexy responders. The most common times to response were 37 days for EDS and 25 for cataplexy. The most common times tomaximum response were 106 days for EDS and 213 days for cataplexy. For those patients who initially took placebo and switched to sodium oxybate, the results were similar, except that time to maximum response was longer.

What were the authors’ conclusions?

Most patients’ symptoms responded to sodium oxybate within 2 months, but a longer period to reach maximum response was often needed. “Clinicians should recognize that time to initial and maximum response may take weeks to months.”


Bogan RK, Roth T, Schwartz J, Miloslavasky M. Time to response with sodium oxybate for the treatment of excessive daytime sleepiness (EDS) and cataplexy in patients with narcolepsy. J Clin Sleep Med. 2015 Jan 12. pii: jc-00353-14. [Epub ahead of print]

Posted in: Awareness, Education, Research

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