In Case You Missed It! – August 2019

In Case You Missed It! – August 2019

It’s summer and we know you’re busy! Keep up to date with the news we’ve shared via social media with the sleep disorder community in this month’s “In Case You Missed It!” So don’t worry if you’ve missed anything – we’ve got you covered!

 

JOIN US IN VANCOUVER, B.C., IN SEPTEMBER!

Join HF and WUN in Vancouver at the SLEEP EXPO on September 21st! This FREE event is for people with narcolepsy or idiopathic hypersomnia, their family and friends, plus educators, clinicians and researchers. Leading experts will share their latest research on treatment options, the impact of these rare disorders, and strategies for living the fullest life possible.  Registration: click HERE and scroll to the bottom to find the ORANGE “Register” button.

 

 

 

JOIN US IN CHICAGO IN OCTOBER! WE’RE GETTING #BEYONDSLEEPY IN CHICAGO ON OCTOBER 19!

We will be hosting a Hypersomnia Educational Meeting in Chicago on Saturday, October 19, 2019 from 10:00 a.m. to 3:00 p.m. at the Sheraton Suites Chicago O’Hare Hotel. We have secured a discounted rate for attendees – book your room now! More event details coming soon!

 

 

 

 

SAVE THE DATE! WE’VE ANNOUNCED OUR 2020 HF CONFERENCE DATES!

We’ve just announced the dates for our 2020 HF Conference! Join us in Philadelphia on June 13-14, 2020, for our Conference, where top sleep medicine researchers and physicians will be updating us on the latest research and treatments for IH and other rare sleep disorders.  And be sure to join us on Friday evening (June 12), for a free social “meet and greet.” More event details coming soon.

 

 

DR. TROTTI TALKS ABOUT IH TREATMENT OPTIONS IN OUR HF CONFERENCE VIDEO

Watch an informative and dynamic presentation by Dr. Lynn Marie Trotti of Emory University entitled “Conventional (and not-so-conventional) Treatments for Idiopathic Hypersomnia”. Her expansive overview includes the “usual” IH treatments, but also discusses less conventional treatments like sodium oxybate, clarithromycin, compounded flumazenil, levothyroxine, and transcranial direct current stimulation. Recorded at HF’s 2018 Baltimore Conference, the video begins with a brief 2019 treatment update. Our thanks to Dr. Trotti, and to our donors, who make these important resources possible! Visit our website to watch Dr. Trotti’s video and download her PowerPoint slides.

 

 

THE HYPERSOMNIA FOUNDATION IS DELIGHTED TO WELCOME REBECCA KING TO OUR BOARD OF DIRECTORS

The Hypersomnia Foundation is delighted to welcome Rebecca King to our Board of Directors. “Rebecca came to the Hypersomnia Foundation as a volunteer Legislative Advocate, and we are very excited to have her talent and expertise on our Board,” said Diane Powell, HF Chair and CEO.

Rebecca has worked with state and local governments developing policy and passing legislation. She has a keen interest in legislative advocacy on behalf of the IH and sleep disorders community. One of Rebecca’s areas of focus is building relationships between the Hypersomnia Foundation, government entities such as the NIH and FDA, and rare disease organizations focused on public policy. Visit our website to learn more about Rebecca and our entire Board of Directors who are working together to get us #BeyondSleepy!

 

 

CLASSIFICATION OF HYPERSOMNIAS UPDATE

In consultation with our Medical Advisory Board Chair, we have updated our “Classification of Hypersomnias” webpage. In the introduction, we have clarified that the HF follows the ICSD-3 classification guidelines, which includes differentiating between hypersomnia and hypersomnolence . In the section on Classifying Primary Hypersomnias by Symptoms and Sleep Test Results, we’ve added a new paragraph after the chart, which further discusses the similarities between IH and NT2. This updated information will help medical providers (and people with IH and related disorders) understand and distinguish between various sleep disorders, thereby leading to more correct diagnoses. Our website is full of information and resources about #IH and related sleep disorders. And best of all, it’s FREE! Check out the recent update on our webpage and share with friends and family. Together we can get #BeyondSleepy!

 

 

MEDICAL STUDENTS SPEND ONLY ABOUT THREE HOURS LEARNING ABOUT SLEEP

We were very excited to be at the American Academy of Family Physicians’ National Conference of Family Medicine Residents and Medical Students, held in Kansas City, Missouri, in late July. Medical students spend only about three hours learning about sleep, so we were eager to raise awareness of IH & other rare sleep disorders with the over 2,500 medical students and residents who attended. Read more about medical students and what they learn about sleep disorders HERE.

 

 

POSSIBLE TREATMENT FOR HYPERSOMNIA FOR PEOPLE WITH A HISTORY OF TRAUMATIC BRAIN INJURY

If you have a hypersomnia and a history of TBI (traumatic brain injury), you may want to discuss with your doctors this article (which you may be able to access for free from your local medical library) and the possibility of trying treatment with steroids.

 

 

ANESTHESIA STUDY YIELDS NEW INSIGHTS INTO NEUROSCIENCE OF SLEEP

A recent study used general anesthesia as a tool to learn more about mammalian brain activity. When mice were placed under multiple classes of general anesthesia, a cluster of neurons were activated in the brain’s hypothalamus, which produced slow, oscillating waves similar to those observed in the brains of mice that were sleeping deeply. When these neurons were later artificially deactivated, the effects of general anesthesia were shortened, showing that deactivation disrupts natural sleep. The discovery suggests there may be a neural pathway in the mammalian brain that is shared by general anesthesia and natural sleep, perhaps opening the door to new drugs for anesthesia, pain management, and sleep disorders.  Read more about the study HERE.

 

 

UPDATE YOUR CORDS PATIENT REGISTRY DATA

Why is it important to update your CoRDS patient registry data on a regular basis? Researchers can learn a LOT from knowing whether your sleep disorder changes over time, whether your sleep disorder is affected by medication changes, etc. Even if nothing has changed, that’s vital data, too. Update your information HERE and if you haven’t signed up for our patient registry yet, please do so today on our website. You can help solve the puzzle of idiopathic hypersomnia and related disorders.

 



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