Hypersomnia Foundation

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Celebrate with the Hypersomnia Foundation

Celebrate with HF: Three Years of Awareness, Education, and Research

A message from the new CEO/Chair:

The Hypersomnia Foundation had a great year in 2016! As I look over the list of the year’s accomplishments, I am keenly aware of the tireless dedication and hours of work from the very beginning of HF, that made all this possible: from the founding three years ago through the recent leadership of Cate Murray into a growing non-profit able to achieve so much.

As I begin my term of leadership service, I feel fortunate not only to be working with an incredible Board of Directors, but to have the support of our prestigious Medical and Scientific Advisory Boards.

We also have an important resource in our Advisory and Advocacy Council (known as PAAC): volunteers who have become and will continue to be an important resource for HF’s outreach.

Finally, we are all grateful to our donors who make our work possible, and to the hypersomnia community, for your inspiration. I look forward to working with all of you as we continue on our mission to get #BeyondSleepy!

-Diane Powell

 

The Hypersomnia Foundation, Inc. (HF) is committed to increasing awareness and education about, and research for better understanding of idiopathic hypersomnia and related disorders. Together with the hypersomnia community we celebrate our third year organized as a public 501c3 charity! As an all-volunteer organization, we are proud of our accomplishments for the hypersomnia community in 2016:

  • February 29- HF participated in Rare Disease Day by publishing “A United Effort to Fuel Research on Hypersomnia” in SomnusNooze we updated milestones of the hypersomnia registry, and creating a graphic to share through social media as we prepared to launch mid-year.
  • March 6-11- National Sleep Awareness Week – We reached out to our SomnusNooze audience asking for statements about coping with hypersomnia, and received many poignant and powerful responses. The #BeyondSleepy tag-line was created and images developed to capture as FB/Twitter/LinkedIn profile pictures for sharing and spreading awareness about hypersomnia.
  • May 16–The HF responded to the NIH’s call for input as it was preparing to set its new research agenda for sleep.
  • June 10- A story about idiopathic hypersomnia was on the first page, top of the fold of the Denver Post, as we prepared to host our regional meeting in Denver. We also reached out to new and existing Health Care Providers; distributing 2,000 postcards giving information about hypersomnia, HF, and our regional meeting.
  • June 12- The HF Denver meeting far exceeded our expectations. From the quality of the speakers and their presentations to the number of attendees, and the ability to offer Livestream of the conference due to two generous grants the conference was a huge success.  Over 1500 people viewed the HF meeting via Livestream with slightly more than 70% watching from the US; the rest of the viewers were in 11 other countries, including Australia, Norway, France, the UK.
  • Also on June 12- After two years of seemingly endless revisions and input from researchers, physicians, CoRDS staff, and people with diagnosed with central disorders of hypersomnolence, the Hypersomnia Foundation Registry at CoRDS was launched. This registry, housed through CoRDS (Coordination of Rare Diseases at Sanford), will form the backbone of many future research projects to be conducted by scientists from throughout the world.  The registry will garner new insights into the disease processes and help scientists better understand differences between the various hypersomnia disorders. As of this past December, 447 people have completed the CoRDS registry; a boon to future research! Go to http://www.hypersomniafoundation.org/registry/
  • June 13-14- Three HF board members, at their own personal expense, attended the annual Associated Professional Sleep Societies (APSS) meeting in Denver to learn about the latest sleep research and clinical practices relating to hypersomnia. Numerous scientific talks and poster sessions were attended, and Board Members met young investigators interested in the study of hypersomnia.

And since June:

  • We have developed plans for a SomnusNooze feature called Ask the Doctor.  Members of our Medical Advisory Board (MAB) have graciously offered to answer general questions about idiopathic hypersomnia, as well as the other central disorders of hypersomnolence that include narcolepsy type 1 and 2 and Kleine-Levin syndrome.
  • We continue to grow our MAB – After our Denver conference we had two new physicians give a resounding “yes” to join Dr. Jason Ong and Dr. Michel Lecendreux. That brings the HF MAB to a total of eight medical healthcare professionals working in the field of hypersomnia.
  • 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 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, most notably through the launch of the PAAC: People with Hypersomnia and Advocates Advisory Council.  The PAAC was developed as a means to boost communication, gather input, and share ideas with those in the hypersomnia community. The group meets via phone once a month.

And finally…

  • The HF Scientific Advisory Board (SAB) is growing and creating a plan to raise awareness about hypersomnia among clinical and basic science researchers. One key component of this plan is a grants program that will financially support innovative research applications that are most likely to positively impact the hypersomnia community. Announcement of this program to the scientific community will depend upon having funds in hand sufficient to attract the best science as well as sustain this initiative. We have been building a research fund since our incorporation and continue to fundraise toward this effort.
  • SomnusNooze, our free electronic newsletter, continues — written and edited by volunteers, with all clinical/scientific information vetted by a member of the Medical Advisory Board (MAB). Delivered to over 1,445 inboxes, up 25% since the first of the year, on topics including clinical trial opportunity, summaries of scientific articles, drug and treatment updates, personal Journey Stories, coping tips, new doctor details, information on disability issues, use of service animals, and research opportunities. “Ask the Doctor” feature coming soon. Subscribe here: http://www.hypersomniafoundation.org/hypersomnia-news/somnusnooze/

As we prepare for 2017 we are excited for new opportunities to raise awareness, education and research about idiopathic hypersomnia and related disorders. We appreciate the support, feedback and great ideas from the entire hypersomnia community!

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Dr. Dale Edgar Joins the Hypersomnia Foundation SAB

The Hypersomnia Foundation invites you to join us in welcoming Dale M. Edgar, PhD, as the newest member of our Scientific Advisory Board. Dr. Edgar joins Drs. David Rye, Nicholas Frank, and James Krueger in crafting our research agenda, raising awareness about hypersomnia in the scientific community, and developing our mechanism for reviewing, scoring, and funding the best research on the understanding and treatment of hypersomnia from the brightest young scientists.
Dr. Dale Edgar is an experienced scientist, drug hunter, and entrepreneur, who recently retired as an executive leader at Eli Lilly and Company. He is also a renowned expert in sleep disorders research and development. Dr. Edgar recently cofounded Novion Pharmaceuticals, a start-up neuroscience biotechnology company focused on the discovery and development of novel treatments for sleep disorders, where he is senior vice president of research.

Dr. Edgar previously served as Chief Scientific Leader of Discovery Sleep Research at Eli Lilly and Company – a cross-functional preclinical and clinical R&D function focusing on innovative medicines for sleep disorders and sleep-related comorbidities in psychiatry, pain, neurodegenerative disease, and metabolic disease. Within a year of joining Lilly he was conferred the prestigious title of Lilly Distinguished Research Fellow — the highest honor bestowed upon a scientist at the company. Dr. Edgar’s global multidisciplinary teams—located in the United Kingdom, Singapore, and the United States—delivered numerous compounds from inception to human clinical trials. Later in his career, Dr. Edgar was promoted to Global Head of Science and Technology Partnerships, responsible for the strategy and oversight of consortia, public private partnerships, and academic affairs across the Lilly research enterprise. He served on numerous governance committees, led Lilly’s Post-Doctoral Scientist Training Program, founded the prestigious Lilly Innovation Fellowship Award program, and served as a senior science and technology advisor to the President of Lilly Research Laboratories.

Prior to joining Lilly, Dr. Edgar was Cofounder, Senior Vice President and the Chief Science & Technology Officer of Hypnion Inc—a spin-out of the science and technologies he developed at Stanford University. Dr. Edgar led Hypnion’s preclinical and clinical research teams responsible for the identification and validation of novel pharmacological treatments for insomnia and disorders of excessive sleepiness. Hypnion was acquired by Eli Lilly & Company in April 2007. Prior to founding Hypnion in 2000, Dr. Edgar was Associate Professor of Psychiatry & Behavioral Sciences and Director of the Sleep and Circadian Neurobiology Laboratory in the Sleep Disorders Research Center, Stanford University School of Medicine. During his 15 years at Stanford University, Dr. Edgar achieved international recognition as a leader in sleep and circadian neurobiology and sleep-wake pharmacology. He is well known for his mentorship and training of young scientists and his seminal contributions in sleep and circadian physiology, including the identification of wakefulness-promoting mechanisms controlled by the suprachiasmatic nucleus and opponent processes that modulate physiological sleepiness. Dr. Edgar is also the principal inventor of SCORE™, a family of computerized real-time sleep and physiological assessment technologies and integrated pharmacological database that have greatly accelerated the process of preclinical drug discovery and lead optimization. These technologies are being used to help transform drug discovery at Lilly.

Dr. Edgar is a member of the Harvard Medical School Division of Sleep Medicine Executive Council, the ASPIRE Advisory Committee at Vanderbilt University School of Medicine, and the NeuroNET Advisory Committee at UT Knoxville. He has previously served as an officer of the Sleep Research Society and on Editorial Boards of the journal Sleep and the Journal of Biological Rhythms. He has been the principal investigator of numerous NIH, DOD, and industry partnership grants focused on sleep and circadian neurobiology, pharmacology and phenotyping. He received his master’s degree in biology from San Jose State University while a NASA Graduate Research Fellow at the NASA-Ames Research Center and then received his doctorate in biology/physiology from the University of California. He received postdoctoral training at Stanford University under Prof. William C. Dement. Dr. Edgar has published extensively, has numerous patents in sleep-wake drug discovery, and continues to educate on sleep health awareness and its importance to health care, the economy, and national security.


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Complete the CoRDS Registry to Raise Funds for Research!

Hypersomnia Australia is designating September 5- 11th as Idiopathic Hypersomnia Awareness Week. Their theme this year is Improving Quality of Life.

We can’t think of a better way to improve the lives of people with Idiopathic Hypersomnia than to make a special push toward research and finding new treatments – and one day, a cure.

Throughout the month of September, YOU can have a big impact on working towards these goals. The Hypersomnia Foundation’s Board will donate $50 to the Foundation’s Restricted Research Fund for every person with hypersomnia (or a related sleep disorder) who completes the patient registry at CoRDS by September 30th!

So, by registering with CoRDS and completing the registry by the end of September, you score a double win: your completed questionnaire gives researchers another piece of the puzzle and you raise $50 towards funding research. (If you began the questionnaire but didn’t finish it, coming back to complete counts!]

Read on for more details and tips for completing the registry, and then click the CoRDS link below to get started today!

What is the Coordination of Rare Diseases at Sanford (CoRDS) registry?
“…CoRDS is a centralized international patient registry for all rare diseases.  The goal of the CoRDS registry is to connect as many patients and researchers as possible to help advance treatments and cures for rare diseases.” Be assured that your identity is completely confidential. Your personal information will be given an ID number, which will then be linked with your responses to questionnaires – no researcher or the Hypersomnia Foundation will ever be able to connect your personal information with your ID number.

Who should participate in the CoRDS hypersomnia-specific registry?
Any person diagnosed with a central disorder of hypersomnolence—idiopathic hypersomnia, narcolepsy type 1 or 2, or Kleine-Levin syndrome—can contribute valuable information. For example, researchers want to know which symptoms are more common to each of these disorders as well as those symptoms that affect everyone with one of these disorders.

If my identity is protected, how will HF know if I have completed the registry?
CoRDS will simply provide the number of registrations on of September 1st and 30th.

OK, I’m ready to make my contributions to research!!  How do I get started??
You can also complete registration via regular mail by calling CoRDS at (877) 658-9192 or sending an email to cords@sanfordhealth.org and requesting paper versions of the Registry materials. If you would like to complete it online, click the link below or copy it into your browser. (It works best with updated versions Internet Explorer, Google Chrome, or Mozilla Firefox.)

https://cordsconnect.sanfordresearch.org/BayaPES/sf/screeningForm?id=SFSFL

OK, I’m on the site – now what?

Step 1: You will be asked to answer some basic questions in a SCREENING FORM.

TIP: Once you have completed the screening form and clicked submit, on the next screen, your first name will become your user name. You will be asked to select a password and set up a security question. Please make note of these responses.

The next screen confirms that you have submitted your screening form, but you are not yet enrolled.

Step 2: : Click the button at the top of the screen that says, Start Questionnaire.

TIP:  click on the SAVE & NEXT button in the upper right-hand corner of the screen to proceed to the next set of questions. Some people had a hard time finding how to proceed.

TIP: A question requires you to calculate your age at time your symptoms began. Here is a link to an online calculator to help determine age: http://images.pearsonclinical.com/images/ageCalculator/ageCalculator.htm

Step 3 – the most important part!: The final piece is the Hypersomnia Questionnaire. Please be as complete as possible in answering these questions. Although none of the questions are required, researchers may not be able to use your responses in their work if you do not answer all of the questions.

TIP: Take your time. Take a breather. You can save the questionnaire at any point, close out and log back into the registry at a later date in (if you remember your user name and password). Even if you have clicked SUBMIT at the end of the questionnaire, you can go back at any time and update your answers.

TIP: The questions do not get harder as you go along! In other words, if you come across a couple of tough questions, don’t assume that the rest of the questions will be difficult. Some people find it easier to go through the entire questionnaire to answer all the “easy” questions first, taking note of which questions they need to come back to and complete.

TIP: Because you can move onto the next page even if you have not answered all of the questions on your current page, please review your answers or make note of those questions that you have not answered before saving and clicking to the next page.

TIP: Some of the “pages” are long. Please scroll to the bottom of each page to “submit.”

TIP: Depending on your diagnosis, you might be invited to participate in additional questionnaires from other organizations. It is entirely up to you if you complete those questionnaires.

ONCE YOU HAVE COMPLETED EVERYTHING AND CLICKED SUBMIT – CONGRATULATIONS!

You’ve made a very valuable contribution to solving the puzzle of Hypersomnia. And if you have completed your questionnaire by September 30th, you’ve also earned $50 for research!

We are most grateful to the members of the PAAC (People with hypersomnia And Advocates Council), who have completed the Registry and provided these valuable tips. If you have any questions about the enrollment process or how to complete the three steps, please contact CoRDS at (877) 658-9192 or cords@sanfordhealth.org

If you have already completed the CoRDS registry, fantastic! Please help get the word out to the hypersomnia community and encourage others to take part and complete it. If not, please enroll in the Hypersomnia Registry at CoRDS today. Your enrollment during the month of September will provide answers and simultaneously fund research. Together we can solve the puzzle of hypersomnia one piece at a time!

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Together, We Can Solve the Puzzle of Hypersomnia

Together, We Can Solve the Puzzle of Hypersomnia

Together, We Can Solve the Puzzle of Hypersomnia

What is a Patient-Powered Registry? Simply put, a patient registry is a collection—for one or more purposes—of standardized information about a group of patients who share a condition or experience. According to a publication from the Agency for Healthcare Research and Quality Research, "Patient-powered registries and patient-powered research networks offer new directions for patient-centered outcomes research, and contribute to translational science in important ways. Experts agree that these registries are transforming patient/caregiver support and advocacy groups into research organizations. They also provide patients and family members another way to become engaged in research beyond the role of advisor or informant to researcher-generated studies." In 2015, Dr. Michael Twery, Director of the National Center on Sleep Disorders Research at the National Institutes of Health, told the Hypersomnia Foundation that establishing a patient-powered  registry was the most important thing that we could do. Therefore, a group of volunteers, including Board members, CoRDS (Coordination of Rare Diseases at Sanford), and the Medical and Scientific Advisory Boards of the Hypersomnia Foundation spent the past two years developing questionnaires to collect standardized information from people who have been diagnosed with one of the central disorders of hypersomnolence: idiopathic hypersomnia, Kleine-Levin syndrome, or narcolepsy (type 1 or 2).   What is an IRB? The purpose of an Institutional Review Board (IRB) is to weigh the risks and benefits of participating in research and to protect the rights and welfare of the research participants. The IRB must review and approve all “research” that involves human participants before beginning the research. Only when the answer is to all of the following questions is “yes,” to all of the following questions, you are conducting research: Was information collected in a systematic manner (that is, according to a predetermined set of rules)? Will information be used to draw conclusions about a general principle or question?  Will the information be distributed beyond the immediate setting in which it was collected?

What is a Patient-Powered Registry?
Simply put, a patient registry is a collection—for one or more purposes—of standardized information about a group of patients who share a condition or experience. According to a publication from the Agency for Healthcare Research and Quality Research, “Patient-powered registries and patient-powered research networks offer new directions for patient-centered outcomes research, and contribute to translational science in important ways. Experts agree that these registries are transforming patient/caregiver support and advocacy groups into research organizations. They also provide patients and family members another way to become engaged in research beyond the role of advisor or informant to researcher-generated studies.”
In 2015, Dr. Michael Twery, Director of the National Center on Sleep Disorders Research at the National Institutes of Health, told the Hypersomnia Foundation that establishing a patient-powered  registry was the most important thing that we could do. Therefore, a group of volunteers, including Board members, CoRDS (Coordination of Rare Diseases at Sanford), and the Medical and Scientific Advisory Boards of the Hypersomnia Foundation spent the past two years developing questionnaires to collect standardized information from people who have been diagnosed with one of the central disorders of hypersomnolence: idiopathic hypersomnia, Kleine-Levin syndrome, or narcolepsy (type 1 or 2).  
What is an IRB?
The purpose of an Institutional Review Board (IRB) is to weigh the risks and benefits of participating in research and to protect the rights and welfare of the research participants. The IRB must review and approve all “research” that involves human participants before beginning the research. Only when the answer is to all of the following questions is “yes,” to all of the following questions, you are conducting research:
Was information collected in a systematic manner (that is, according to a predetermined set of rules)?
Will information be used to draw conclusions about a general principle or question? 
Will the information be distributed beyond the immediate setting in which it was collected?

Wouldn’t you like to do something to help solve the puzzle of hypersomnia? Well you can! Sharing information about your symptoms, your previous treatments, and your diagnostic journey as part of the Hypersomnia Registry at CoRDS (Coordination of Rare Diseases at Sanford) holds the key to solving this complicated puzzle called hypersomnia.

Anyone can gather information on the Internet through polls, questionnaires, or surveys, but, to publish their results in a medical journal, researchers can use only information that has been obtained in a very specific manner that incorporates legal informed consent and privacy regulations. Therefore, CoRDS has put many safeguards into place to ensure that researchers can use the information you provide.

The first step is called Institutional Review Board (IRB) approval. (Take a look at the side bar accompanying this article to learn more about IRBs). The IRB at Sanford Research approved not only the CoRDS registry questionnaire, but also the hypersomnia-specific questionnaire that is part of the registry. Any researchers who want to use the information in the registry also have to obtain a first approval from their own IRBs and then a second approval from the Sanford IRB.

The second step in safeguarding your information is informed consent. This means that, in the process of signing  up to participate in CoRDS, you are given a chance to read information about the registry and you then sign a form that indicates you understand what you are doing. You can sign this form either electronically, if you are filling out the questionnaires on line, or with a pen, if you are completing the paper version of the registry. If you have any questions, you can call or send an email to CoRDS before you sign the consent form.

Thirdly, the information you provide is kept strictly confidential. The questionnaires that you complete will never be associated with your name—a computer generates an ID number that is assigned to your identifiable information (name, address, etc.) and to your responses to the questionnaires. Your identifiable information is then kept in one database and your questionnaire responses, tagged only with the ID number, are in a separate database (this is called de-identified data). Once researchers receive approval to look at the registry or questionnaire responses, they will be given only the de-identified data. The Hypersomnia Foundation does not have access to any of the information at any time.

Your privacy is also protected even if you indicate on your questionnaire that you are willing to be contacted to participate in additional research projects. For example, researchers might contact CoRDS and tell them that they want to send an additional questionnaire to all participants who have a specific symptom, such as long sleep time (> 11 hours/24 hours). CoRDs personnel would then contact everyone in the registry who indicated that they sleep for more than 11 hours per day and would like to participate in additional studies. CoRDS would provide these people with the researchers’ contact information, and it would be up to the individual people whether they contact the researchers to participate in the additional research.

Participating in the Hypersomnia Foundation Registry at CoRDS is a simple way for you to take part in research into the causes and treatments of hypersomnia. When we all complete the questionnaires, researchers will be able to compare our answers with those of hundreds, if not thousands, of others. The researchers will then be able to detect patterns, identify common symptoms, better define the disorders, and gain insights into what treatments work and those that don’t.

If every person with hypersomnia completed these simple questionnaires, researchers would be able to perform a crucial first step in research: to map the natural history of the disorder. Later this year, the Food and Drug Administration will be accepting applications for up to $400,000 in funding per year over the next five years to conduct natural history studies in rare diseases. To be competitive in the grant process, hypersomnia researchers will need your help. They will need a large database of information on patients with idiopathic hypersomnia, KLS, and narcolepsy, all of which are rare diseases. This is the first of many reasons why your participation in the Hypersomnia Foundation Registry at CoRDS is so vital.

Becoming part of the registry is easy. Won’t you take an hour of your time to help solve the puzzle of hypersomnia? Simply go to http://www.sanfordresearch.org/cords/ and click on the ENROLL NOW button to become a part of the Hypersomnia Registry at CoRDS. And feel free to download the new CoRDS/Hypersomnia Registry logo and make it your photo on Facebook.

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