In Case You Missed It! – September 2020

Autumn will soon be upon us! We hope everyone will be able to enjoy cooler weather and the changing of the leaves! We are grateful to be able to keep in contact with our community through social media, email, and SomnusNooze. If you’ve missed any of the latest news we’ve shared, don’t worry! Get up to date with this latest edition of “In Case You Missed It!”

  • SAVE THE DATE!: The Hypersomnia Foundation is hosting a FREE Virtual Event – “The Research Continues”
  • MAKE A BIG IMPACT: Your donation to HF will be matched at 50%!
  • NEWLY RELEASED VIDEO: Watch “Participating in a Clinical Trial” recorded at our Conference in Baltimore
  • SURVEY PARTICIPANTS NEEDED: Help improve screening for narcolepsy and idiopathic hypersomnia in children
  • FREE CONFERENCE: Attend a virtual conference on sleep, anesthesia and chronic pain
  • HELP RESEARCHERS: Be a part of the CoRDS Patient Registry
  • INTERESTING READ: UC Berkeley researchers identify new EEG pattern for dreaming
  • DOWNLOAD AND SHARE: HINT test helps raise awareness of hypersomnias
  • GOING SHOPPING?: Support the Hypersomnia Foundation through Amazon Smile

So don’t worry if you’ve missed anything. We’ve got you covered!


SAVE THE DATE! HF HOSTING A FREE VIRTUAL EVENT

The Hypersomnia Foundation will be hosting “The Research Continues” – a FREE virtual event on Saturday, October 24 at 1:00 p.m. The COVID-19 pandemic has left many in the hypersomnia community wondering about the status of clinical trials and research studies—how have they been affected by the lockdowns and safety advisories? Find out the latest answers!

Join us on October 24 at 1:00 p.m. for a FREE, interactive, 90-minute virtual program, during which hypersomnia experts from both the research and the pharmaceutical sides will update us on where their research studies and clinical trials stand. You will not want to miss this virtual event!  Visit the “Events” section of our website for details and registration information, as they become available.


YOUR DONATION WILL MAKE A BIG IMPACT!

Make a one-time donation up to $50 to the Hypersomnia Foundation through GlobalGiving’s “Little by Little” campaign, and they will match it at 50% – that means your $50 gift turns into a $75 donation to HF!

“Little by Little” runs Monday, September 14 through Friday, September 18. Share with your friends and family and let’s make a positive impact on the lives of people with IH and other rare sleep disorders.

Make a donation and make a difference today!


NEWLY RELEASED VIDEO – “PARTICIPATING IN A CLINICAL TRIAL”

We are excited to release Ms. Veronica Moore’s presentation from the Hypersomnia Foundation Conference in Baltimore. In this video, “Participating in a Clinical Trial”, Ms. Moore, MA, Patient Advocate and Insights Lead at IQVIA, a leading global organizer of clinical trials, discusses how patient data influence the design and endpoints of clinical trials and how patients can best engage with the clinical trial process.

Ms. Moore is a patient-centric leader with over a decade of experience working in various roles such as rare disease clinical research manager, project management, patient engagement and clinical trial study design.

Watch Ms. Moore’s video and download her accompanying PowerPoint slides.


SURVEY PARTICIPANTS NEEDED

Dr. Kiran Maski, pediatric neurologist and sleep medicine specialist at Boston Children’s Hospital and a member of the Hypersomnia Foundation’s Medical Advisory Board, has developed a questionnaire to improve screening for narcolepsy and idiopathic hypersomnia in children, with the goal of helping school and health care professionals identify hypersomnia symptoms quickly.

They are currently looking for participants to complete online surveys and will provide a $10 gift card as a token of appreciation. Participation should take no more than 10-15 minutes.⠀⠀⠀⠀⠀⠀⠀

Who is eligible for this study?

– Patients between the ages of 8-18 years who have been recently diagnosed (within one year) with narcolepsy or idiopathic hypersomnia.⠀⠀⠀⠀⠀⠀

– Participants must be able to understand the purpose of the study.

If you would like to learn more about the study or are interested in participating, please email


FREE VIRTUAL CONFERENCE ON SLEEP, ANESTHESIA, AND CHRONIC PAIN

The Society of Anesthesia and Sleep Medicine’s (SASM) 10th Annual Meeting is October 1-2, 2020.  This year’s theme is “Innovation & Synergism in Sleep, Perioperative Care & Chronic Pain: The Future is Here” and will feature a keynote address from Dr. Jerome Adams, MD, U.S. Surgeon General.

Sessions scheduled during this two-day virtual event include:

  • Sleep and Anesthesia during the COVID-19 Pandemic
  • The Role of Gender on Sleep and Pain
  • The Future of Research and Research Funding in Sleep Medicine
  • Cannabinoids for Pain and Sleep

Representatives from the Hypersomnia Foundation will be sharing their stories during the “Patient Perspectives: Living with Idiopathic Hypersomnia” session on October 1st.

Register HERE for this FREE event. Helpful information for registering:

  1. On the registration form, under the “Specialty” section, you can check “Other” and then in the pop-up box, you can write “Patient” or “HF Constituent” or both.
  2. This event is FREE to attend, but there is no “Free” option on the registration form, therefore, ignore “Payment Type” and click “SUBMIT”.
  3. When you get to the payment section, DO NOT PAY – this event is free for patients, family members, interested parties, and caregivers. Click on “Add Another Participant” then exit out of the page. It has been confirmed by SASM that you will be registered. We have also been told there are no automated registered emails being sent out but a Zoom invitation from SASM will be sent closer to the event.

If you have questions or concerns, please contact us at and we will help walk you through the Registration process.


ARE YOU A PART OF THE CORDS PATIENT REGISTRY?

If you have been diagnosed, anywhere in the world, with idiopathic hypersomnia, Kleine-Levin syndrome, narcolepsy, or hypersomnia associated with certain other conditions, you can make an important contribution to hypersomnia research by sharing information about your symptoms, your previous treatments, and your diagnostic journey in the Hypersomnia Foundation’s Registry at CoRDS (Coordination of Rare Diseases at Sanford).

With over 2,000 rare sleep disorder participants, this information has helped researchers in their efforts to unlock the mysteries of these disorders by accelerating research for treatments. Read about the progress and success of the CoRDS registry on our website.

If you aren’t a part of CoRDS, register today, and if you are already registered, be sure to update your information annually.


NEW EEG PATTERN IDENTIFIED FOR DREAMING

UC Berkeley researchers have pulled a signal out of the noise that uniquely defines dreaming, or REM sleep, potentially making it easier to monitor people with sleep disorders.

Each year, hundreds of thousands of people undergo overnight studies to diagnose problems with their sleep, most of them hooked up to an electroencephalogram (EEG) to monitor brain activity as they progress from wakefulness to deep, slow-wave sleep and on into REM sleep. But EEGs alone cannot tell whether a patient is awake or dreaming: Doctors can only distinguish REM sleep by recording rapid eye movement and muscle tone, since our bodies relax in a general paralysis to prevent us from acting out our dreams.

“These new findings show that, buried in the electrical static of the human brain, there is something utterly unique — a simple signature,” said co-author and sleep researcher Matthew Walker, UC Berkeley Professor of Psychology and Neuroscience. “And if we measure that simple electrical signature, for the first time, we can precisely determine exactly what state of consciousness someone is experiencing — dreaming, wide awake, anesthetized or in deep sleep.”

Read more about these findings in “Berkeley News.”


HINT TEST HELPS RAISE AWARENESS OF HYPERSOMNIAS

Have you heard about our “HINT” test? It’s a quick four-question screening test, to help school professionals, primary care providers, and others identify people who might have a sleep disorder and may need to see a sleep medicine expert for further evaluation.

The Hypersomnia Foundation wants to raise awareness of hypersomnias among those who are most likely to come in contact with sleepy people and shorten the time between a sleepy person’s first symptoms and a correct diagnosis.

Download the Sleepy Students HINT Test and the Sleepy Patients HINT Test from our website and share both with medical and education professionals.


GO SHOPPING AND SUPPORT HF!

Quarantine has increased online shopping for many—so when you shop, shop on Amazon.Smile and designate the Hypersomnia Foundation as YOUR charity!

We have received over $4,000 from Amazon Smile—thanks to you! With every purchase you make, Amazon donates to HF’s work improving the lives of people with idiopathic hypersomnia and related sleep disorders.

It’s free and easy to set up! Amazon.Smile is also available on the Amazon app for your smartphone or tablet!

So designate the Hypersomnia Foundation as your charity of choice. You shop and Amazon makes a donation. It’s that simple!

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