In Case You Missed It! – November 2018

In Case You Missed It! – November 2018

As the holidays draw near, we know that life can get more hectic. So we’re here to make your life less stressful and more thankful! In this month’s “In Case You Missed It!,” we highlight some of the most important news and social media posts about the Hypersomnia Foundation, idiopathic hypersomnia, and other sleep disorders from the past 4-5 weeks. From a prominent (and familiar) physician joining our MAB to the expansion of eligibility criteria for the Arise2 clinical research study and more, we have you covered!

DR. MANDEEP SINGH JOINS OUR MEDICAL ADVISORY BOARD!

Mandeep Singh, MBBS, MD, MSc, FRCPC has joined our Medical Advisory Board (MAB). Dr. Singh is a clinician-scientist, dual-certified in Sleep Medicine and Anesthesiology with a Masters degree in Clinical Epidemiology and Health Sciences Research, all from the University of Toronto. Some of you may remember hearing him at our conference in Baltimore in June. Dr. Singh was also instrumental in the development of our Anesthesia Guide for people with IH.

ARISE2 CLINICAL RESEARCH STUDY EXPANDS ELIGIBILITY CRITERIA

Balance Therapeutics has expanded the eligibility criteria for its Arise2 clinical research study as of November 2018. The study is now open to people aged 18 through 70 and allows those people currently on a stimulant regimen to participate. This study hopes to find a more effective treatment for those with IH, and will look at the safety and effectiveness of the study drug on mental fogginess, sleep, functionality, and quality of life in those with IH. If you are interested, please reach out to to connect with a research center nearest you or learn more HERE.

XYREM NOW APPROVED FOR PEDIATRIC USE IN AGES 7-17

Jazz Pharmaceuticals announced on October 28th that the Food and Drug Administration had approved Xyrem (sodium oxybate) for the treatment of cataplexy and excessive daytime sleepiness in pediatric patients aged 7 to 17 years with narcolepsy. Xyrem, which is a central nervous system (CNS) depressant, was approved for use in adults in 2002. Read more HERE.

IT’S NATIONAL FAMILY CAREGIVERS MONTH!

November is National Family Caregivers Month, and the Hypersomnia Foundation would like to celebrate those individuals who help to lift us up! Please tell us about the extraordinary caregivers in your life (and send photos of you and your loved ones, too) to . Or comment directly on our Facebook post.

 

THE BEST THING YOU CAN DO FOR SOMEONE WITH #IH IS…

On October 31, we began a call to our IH community to let the world know how we can best care for those living with a hypersomnia. Please check out our Facebook post to see the numerous comments and fill in the blank to share your own response.



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