In Case You Missed It! – January 2019

January 15, 2019 in Current actions, Diagnosis, HF announcements, HF news, Idiopathic hypersomnia, In case you missed it!, Narcolepsy, News about hypersomnias, Raising awareness, Students with a hypersomnia, Take action!, Treatments

Happy 2019! As we welcome the new year, we at the Hypersomnia Foundation have resolved to make things easier for our followers! 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 updates on the JZP-258 clinical trial for IH to updates on research (including research that found the prevalence of both narcolepsy and IH have increased from 2013 to 2016 as well as other research that found that family members of people with narcolepsy also have some sleepiness symptoms) to a new PodCast on our hypersomnia patient registry to a scholarship program for high school seniors with IH, we have you covered!

JZP-258 CLINICAL TRIAL FOR IH CONTINUES ENROLLMENT!

Jazz Pharmaceuticals now has three people with IH enrolled in their study of JZP-258 (a low-sodium alternative product for Xyrem); two of these three people are already receiving the study drug treatment. Jazz is updating the study site information as the study centers become ready to enroll.

Currently, there are three U.S. sites recruiting:
1) Alpine Clinical Research Center in Boulder, Colorado;
2) Clinical Research of Gastonia in Gastonia, North Carolina; and
3) Sleep Therapy & Research Center in San Antonio, Texas.

Jazz’s goal is to have all U.S. and EU sites initiated by end of 2019, although the first half of the year will be limited to mostly U.S. sites. Follow the study at ClinicalTrials.gov; please note, however, that this reflects only those sites that are currently recruiting.

UPDATES ON RESEARCH STUDIES RELATING TO HYPERSOMNIAS!

1. Study Finds Increase in Narcolepsy and IH Prevalence
   A recent retrospective study reports the prevalence of both narcolepsy and idiopathic hypersomnia have increased from 2013 to 2016. While the growth of narcolepsy cases slowed in the latter part of the study period, rates of those with IH grew. Share the Sleep Review article with friends and family and help spread awareness and educate others.
2. Study Finds Family Members of People with Narcolepsy Have Some Sleepiness Symptoms, Too
   Recent research examined family members of people with narcolepsy, and found that while rates of cataplexy-like symptoms were generally low, the RATES OF HYPERSOMNOLENCE WERE HIGH! This is further evidence that sleepiness in general, not just narcolepsy, runs in families. Read more HERE.
3. Study Finds EEG Segments in Sleep Studies Differ Among Patients Who Have Different Sleep Disorders
   Researchers investigated how electroencephalography (EEG) segments in sleep studies differed among patients with NT1, NT2, IH, and controls. Read more HERE.
4. Study Finds That Machine-learning Models Help with Hypersomnia Diagnoses
   Read about it HERE.
5. New Study Finds Orphan Drug Exclusivity Working as Intended
   A new report, commissioned by NORD and published by the IQVIA Institute, shows that prices for on-market orphan drugs rise slower than prices for more common drugs. Read more HERE.

CHECK OUT THE HYPERSOMNIA FOUNDATION’S NEW CoRDS PODCAST!

Listen to the PODCAST of Diane Powell, Hypersomnia Foundation CEO/Chair and Dr. Lynn Marie Trotti, Hypersomnia Foundation Medical Advisory Board Chair, who were interviewed by the Coordination of Rare Diseases at Sanford (CoRDS) regarding our Patient Registry Program. If you haven’t enrolled in our patient REGISTRY, do it today! Sharing information about your symptoms, previous treatments, and your diagnostic journey holds the key to solving this complicated puzzle of rare sleep disorders.

SCHOLARSHIPS AVAILABLE FOR STUDENTS WITH IH!

Project Sleep launched their sixth annual Jack & Julie Narcolepsy Scholarship this month! In 2019, Project Sleep plans to award a record 15 scholarships of $1000 each – ten scholarships will be awarded to students with narcolepsy, and another five scholarships, funded by the Hypersomnia Foundation, will be awarded by Project Sleep to students with idiopathic hypersomnia. Share this announcement with your community so High School Seniors with narcolepsy or IH can review the eligibility criteria & apply today. We are so honored to support such a wonderful program!

HURRAY! WE MET OUR 2018 END-OF-YEAR FUNDRAISING GOAL, BUT WE STILL NEED YOUR HELP IN 2019! PLEASE CONSIDER SETTING UP A RECURRING DONATION.

THANK YOU! Because of you, we exceeded our 2018 end-of-year fundraising goal and RAISED $11,517! We are already busy in 2019, continuing to advocate for increased research and better treatments for IH. One goal for 2019 is to expand our awareness outreach to education and medical professionals – but we can only do it with your help! Please DONATE today, and consider making a recurring gift, which allows us to make better budgeting decisions. Together we will make a difference and get #BeyondSleepy!