In Case You Missed It! – June 2020

In Case You Missed It! – June 2020

With quarantine restrictions slowly lifting across the country, we hope everyone continues practicing social distancing and wearing a facemask as you venture out and enjoy the beginning of summer! We are grateful to be able to stay in touch with our community through social media, email, and SomnusNooze, but if you’ve missed any of the latest news we’ve shared, get up to date with this latest edition of “In Case You Missed It!”

  • GREAT INTERVIEW: Amy Desmarais shares her personal journey with idiopathic hypersomnia.
  • CONGRATULATIONS!: Dr. Thanh Dang-Vu releases a new book on neuronal oscillations involved across the sleep-wake cycle.
  • CLINICAL TRIAL: Takeda’s SPARKLE 2002 IH Clinical Trial resumes with a majority of study sites reopening!
  • MUST READ: Make living with a sleep disorder a little easier with our free online “Medical Terminology” guide.
  • FATHER’S DAY: Support the Hypersomnia Foundation while you shop!

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


AMY DESMARAIS SHARES HER PERSONAL JOURNEY WITH IH LIVE ON FACEBOOK

“I truly believe that these sleep disorders—idiopathic hypersomnia, narcolepsy, etc.—are not rare but just rarely diagnosed.” — Amy Desmarais

Amy Desmarais, former HF Board member and current volunteer, shared her personal journey with idiopathic hypersomnia in an interview with Project Sleep’s President and CEO, Julie Flygare. Shared LIVE on Facebook, Amy was the first speaker with IH to share her story through Project Sleep’s “Rising Voices of Narcolepsy Story Sharing Series.” Thank you Project Sleep for having Amy share her powerful story of living with IH!

Watch Amy’s interview here.


DR. THANH DANG-VU RELEASES NEW BOOK ABOUT NEURONAL OSCILLATIONS OF SLEEP-WAKE CYCLE

Congratulations to Dr. Thanh Dang-Vu, a member of the Hypersomnia Foundation’s Medical Advisory Board, on the release of his new book “Neuronal Oscillations of Wakefulness and Sleep, Windows of Spontaneous Activity of the Brain.” Written for medical professionals, Dr. Dang-Vu’s book will have great significance in future sleep medicine research. Chapters include reviews of recent findings that highlight different mechanisms of the neuronal oscillations involved across the sleep-wake cycle; details of studies that use neuroimaging techniques and electroencephalographic measures to link sleep and wake functional roles; and the significance brain rhythms have at both the basic and clinical levels of neuroscience, and their role in memory, cognition, aging, and psychiatric disorders.

For more information, visit Springer Publications.


CLINICAL TRIAL UPDATE – TAKEDA’s SPARKLE 2002 IH CLINICAL TRIAL REOPENS STUDY SITES

Takeda’s SPARKLE 2002 Study is testing an investigational drug (TAK-925) to see if it could potentially be a safe and effective way to help increase wakefulness for people with idiopathic hypersomnia. The study is currently recruiting in the U.S., adults age 18-75 with IH (who first experienced symptoms between age 10-30). A study doctor and staff can explain to you in greater detail other requirements and eligibility criteria needed to participate in the study. The total amount of time you may be involved in the study is up to 43 days. Participants will be reimbursed for time and travel.

Visit the Sparkle 2002 website to see if you qualify and to get updates on study sites as they reopen. For more information about this study, download the study brochure and visit ClinicalTrials.gov.

Visit the Hypersomnia Foundation Research Studies page for information about this and other ongoing clinical trials.


FREE ONLINE MEDICAL TERMINOLOGY GUIDE

Understanding the complexities of idiopathic hypersomnia can be overwhelming. Let us help make your journey a little easier with our free online “Medical Terminology” guide that provides simple definitions and explanations for over 150 medical terms. From a description of the “Epworth Sleepiness Scale” to the meaning of “megaphagia”, our free online guide can help you better understand and explain to others the myriad of medical terms associated with IH and related sleep disorders, research, tests, and treatments. Our Medical and Scientific Advisory Boards are continually reviewing, updating, and adding to our guide, so refer to it often.


GIVE A GIFT TO DAD THIS FATHER’S DAY AND HELP SUPPORT HF

Father’s Day is June 21!  As you search for that perfect gift for Dad, shop through AmazonSmile.com and a percentage of your purchase will be donated to the Hypersomnia Foundation.  It’s a simple way to make Dad happy and support a great cause.



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