In Case You Missed It! – July 2019

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Keep up to date with the news we’ve shared via social media in this month’s “In Case You Missed It!”

  • URGENT: Health authorities warn that modafinil may cause fetal harm.
  • CONGRATULATIONS: Dr. Caroline Maness of Emory University is the first recipient of the Hypersomnia Foundation’s Research Award program
  • WORTH SHARING: Just what is IH? Share this article with friends and family who have questions about IH.
  • INTERESTING REPORT: The Australian government recognizes sleep as the third pillar of health.
  • SCIENTIFIC ADVANCES: Learn how artificial intelligence may affect the future of sleep medicine.
  • GREAT OPPORTUNITY: The Hypersomnia Foundation is happy to be sponsoring five camperships for children with IH.
  • RESEARCH STUDIES: Read about ongoing studies and see if you or a friend or family member are eligible to participate.

So don’t worry if you’ve missed anything – we’ve got you covered!



Based on new patient data from a pregnancy registry, French and Canadian health officials have recommended that pregnant women, and women who are trying to become pregnant, not take modafinil. TEVA Pharmaceuticals has recently reported on the results of the 2018 annual report of the ongoing Nuvigil/Provigil (modafinil) Pregnancy Registry in the United States. The results suggested a higher rate of major congenital anomalies, and other adverse reactions, in children exposed to the drug in utero. According to our expert MAB member Prof. Arnulf, “they reported on 5 babies with abnormalities born from 75 women on modafinil. This is significantly larger than the usual 2% of spontaneous birth abnormalities without any drug. Despite the fact that some mothers were treated with combined drugs (which makes determination of specific causality difficult), and despite that the abnormal findings (not described in detail) were different from one baby to another, the French authorities last week firmly recommended stopping modafinil during pregnancy. Earlier data had been reassuring – the French database showed 60 prospective pregnancies on modafinil without any abnormalities, and the data from the German centers showed 28 pregnancies with no abnormal babies but some (not a statistically significant number) had smaller cranial perimeter. The French research center for teratogenicty (CRAT) indicates to be cautious with this new warning, but currently, it seems most prudent to stop using modafinil in current and future pregnancies.” HealthCanada has also recommended that women who are pregnant or who plan to become pregnant not take modafinil. Read details HERE.



We are pleased to announce that Dr. Caroline Maness of Emory University is the first recipient of our Research Award for her proposal entitled Investigating Cytokine Profiles in the Central Disorders of Hypersomnolence. “Dr. Maness’ work will be an important step in understanding the potential role of inflammation as a cause or contributor to excessive daytime sleepiness and other symptoms of hypersomnia,” stated Dr. Lynn Marie Trotti, Chairperson of our Medical Advisory Board.

The Hypersomnia Foundation’s Research Award program is funded through the generosity of our donors and is designed to encourage research into idiopathic hypersomnia and other rare sleep disorders by individuals in the early stages of their professional careers. Applications for our Research Award program are accepted on a rolling basis; more information can be found on our website.



Need to explain to someone what idiopathic hypersomnia is? This brief article from “Global News” might help. Let’s get #BeyondSleepy by spreading awareness and educating others about #IH.




An April 2019 Australian government report recognized sleep as the third pillar of health, alongside fitness and nutrition. Hypersomnolence Australia participated in the inquiry and advocated for several issues of concern to people with IH. Read the summary HERE.



How will artificial intelligence and machine learning change how sleep medicine providers treat their patients? It’s typical for sleep technologists to mull over pages of polysomnography (PSG) data related to eye movements, respiration, brain activity, and more, to look for indicators of sleep disorders, such as sleep apnea or narcolepsy. Machine learning could revolutionize sleep medicine by taking over the diagnostic process, identifying gaps in care, and helping predict CPAP adherence even before therapy begins. Read the complete article HERE.  



The Hypersomnia Foundation is happy to be partnering with Wake Up Narcolepsy to sponsor five camperships for children (ages 5 through 17) with IH and their families at the Center for Courageous Kids’ Camp in Scottsville, Kentucky. Camp will take place October 11-13, 2019 and registration is now open! Children will have a weekend filled with horseback riding, archery, bowling, arts and crafts, and more! Parents will have the opportunity to attend informational sessions and meet other parents of children with sleep disorders for ample peer-to-peer discussions. Attendance is free as Wake Up Narcolepsy is funding camperships for children with narcolepsy and the Hypersomnia Foundation is funding camperships for children with #IH. Families are responsible for travel expenses. Camperships will be filled on a first-come, first-served basis. For more information, email or visit the Courageous Kids website



Adult Volunteers Needed For Newcastle Research Study – The Adult Sleep Laboratory in Newcastle, NSW, Australia, is looking for volunteers for a research study investigating the effectiveness of alternative therapies on sleep and daytime alertness in adults aged 18 years or older with a diagnosis of hypersomnia. Visit the Sleep Health Foundation website for more information and to see if you qualify.

Interested in helping find a new treatment option that may work for people with idiopathic hypersomnia? Answer a brief 10 question quiz to find a participating study center in your area. Study centers are currently only in the United States but Balance Therapeutics is supporting Canadians with IH to screen and potentially enroll if they qualify. Canadian residents, please contact Nichole Baio via email () or phone at (650) 351-7677‬. Please note that the criteria for participation in Balance Therapeutics’ Arise2 study have been updated, and this quiz is new as of April 2019. So if you haven’t taken it yet, please do so now. More details about the Arise2 study can be found HERE.

Seeking participants for a pediatric hypersomnia screening survey. Dr. Kiran Maski, pediatric neurologist and sleep medicine specialist at Boston Children’s Hospital, and a member of the Hypersomnia Foundation’s Medical Advisory Board, has developed a questionnaire that aims to improve screening for narcolepsy and idiopathic hypersomnia with the goal of helping health care professionals identify hypersomnia symptoms quickly. Boston Children’s Hospital is looking for participants between the ages of 8-18 years who have been recently diagnosed (within 1 year) with narcolepsy or idiopathic hypersomnia to answer an online questionnaire, which should take no more than 10-15 minutes. As a token of appreciation, they will provide a $10 gift card if you qualify and complete the survey. If you would like to learn more about the study or are interested in participating, please send an email to Neuro Sleep Research () or call 617-919-6212.

For more information about participating in these and other ongoing research studies (including clinical trials) and for results from past studies, check out our HF Research Studies/Clinical Trials web page.

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