In Case You Missed It! – December 2018
As the end of 2018 draws near, we know that your family and other social obligations can take over your life. So the Hypersomnia Foundation is here to make things easier and more joyful! In this month’s “In Case You Missed It!,” we highlight some of the most important news and social media posts about the HF, idiopathic hypersomnia, and other sleep disorders from the past 4 weeks. From a free webinar (on Dec. 20!) about how to make your health insurance work for you to our year-end PJs and Pillows Challenge to enrollment for a Phase 3 Clinical Trial for JZP-258 for people with IH and more, we have you covered!
DEC. 20 FREE WEBINAR – HOW TO MAKE YOUR HEALTH INSURANCE WORK FOR YOU
The National Organization for Rare Disorders, Inc. (NORD) will be holding a webinar on Thursday, December 20 from 2:00-3:00pm EST/11:00am-12:00pm PST on how to make your insurance work for you. The webinar will cover how insurance works, information on understanding the approval process, and tips on how to successfully reverse a denial. This webinar is perfect for patients, caregivers, and the public. Register today!
IT’S TIME FOR OUR PJS AND PILLOWS CHALLENGE 2018!
Throughout the month of December, the Hypersomnia Foundation is focused on raising awareness of idiopathic hypersomnia. Here’s how you can help!
1) Put on your PJ’s and grab your pillow.
2) Make or print a “Let’s Get #BeyondSleepy!” sign. Download ours HERE!
3) Take a selfie and post it on your social media sites with the hashtags #BeyondSleepy and #PJsandPillows2018.
4) Tag @HypersomniaFoundation; then tag your friends and families, and challenge them to grab their PJs & Pillow and post a selfie.
It’s that simple! Let’s increase awareness and educate others about IH. Together Let’s Get #BeyondSleepy!
JZP-258 CLINICAL TRIAL FOR IH BEGINS ENROLLMENT!
Jazz Pharmaceuticals has announced that the first patient has been enrolled in a Phase 3 clinical trial evaluating the efficacy and safety of JZP-258 for the treatment of idiopathic hypersomnia. The clinical trial for patients with IH will be conducted in multiple study centers in the United States and European Union. This is great news as we move our mission forward to Get #BeyondSleepy!
RESEARCH NEWS – DISEASE BIOMARKERS WILL SOON BE EASIER TO IDENTIFY
A “team of researchers at The University of Texas at Austin has demonstrated a new way to sequence proteins that is much more sensitive than existing technology, identifying individual protein molecules rather than requiring millions of molecules at a time. The advance could have a major impact in biomedical research, making it easier to reveal new biomarkers for the diagnosis of cancer and other diseases, as well as enhance our understanding of how healthy cells function.” This could directly impact IH diagnosis by speeding researchers’ ability to identify proteins that could act as biomarkers for IH and other related sleep disorders. Read more HERE.
CHECK OUT A VIDEO PRESENTATION BY DAVID RYE, MD, PHD, DISCUSSING “NARCOLEPSY & ITS BORDERLAND: NEW INSIGHTS INTO THE ORIGINS OF PERSISTENT SLEEPINESS.”
This VIDEO is a recording of a live feed of a Department of Psychiatry grand rounds at Emory University, held on 9/26/18 and led by Dr. David Rye (seen here in Iceland, where he travels periodically to meet with collaborators interested in discovering genes that influence sleep and sleep disorders). To view this video, you will need to download Adobe Connect, which appears to work on either a MAC or PC (we tried it on both). Dr. Rye requests constructive feedback on any portions of this recording that may be challenging for non-medical viewers, as he frequently presents to both groups. Please email and put DR. RYE in the subject line. Thanks!
IH SCHOLARSHIP UPDATE
This past year, the Hypersomnia Foundation was very pleased to support Project Sleep’s Jack & Julie Narcolepsy Scholarship program, which awarded scholarships to 14 college-bound students exemplifying courage and strength while living with narcolepsy or idiopathic hypersomnia. Catch up with these amazing students as they share about college, managing their sleep disorder, and what this scholarship has meant to them. We are thankful for Project Sleep and proud to support their amazing scholarship program! Read these students’ uplifting updates HERE. And if you missed the original story of our IH scholarship recipient, Jenny, check that out HERE.
READ ABOUT HANNAH’S EXPERIENCE WITH IH ACCOMMODATIONS AT HER COLLEGE
College student Hannah hoped her diagnosis of IH would help change people’s perspectives and allow them to better understand why she was having issues staying awake in class, but she quickly discovered that many people at her school could not understand why she could not control her symptoms. Read her story HERE. And if you need information about seeking the accommodations you need while at school, get our free Educational Guides for students with IH. In 2019, the Hypersomnia Foundation will expand our awareness outreach to education professionals – but we can only do it with your help! Please DONATE today!