SomnusNooze
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 planned HF educational meeting in Seattle in June 2019 to a great video presentation by HF’s SAB Chair, Dr. David Rye of Emory University, to the announcement of our first-ever Executive Director, to a study on the impact of excessive daytime sleepiness, we have you covered!
SAVE THE DATE!!
The Hypersomnia Foundation is pleased to announce that it will hold an educational meeting for people with idiopathic hypersomnia (IH) and related disorders, as well as their supporters, on SATURDAY, JUNE 29, 2019 in SEATTLE! This gathering, which will be the first HF outreach and awareness event on the West Coast, will follow “Snooze Cruise 2019,” which ends in Seattle on June 28th.
This Seattle meeting will be one of a series of educational meetings HF will hold in 2019, in lieu of a formal conference. We hope that holding one-day meetings in a variety of locations will allow more patients and their supporters to take part in an HF event. More details to come as events are organized!
WATCH DR. DAVID RYE’S 2018 HF CONFERENCE PRESENTATION!
HF is thrilled to share Dr. David Rye’s encouraging video overview of the growing scientific interest in idiopathic hypersomnia. Recorded at HF’s conference in Baltimore on June 2, 2018. Dr. Rye, a clinician scientist for over 26 years and tenured Professor of Neurology at Emory University, chairs HF’s Scientific Advisory Board.
HF HIRES AN EXECUTIVE DIRECTOR, STEPHANIE WELLS
HF is delighted to announce that Stephanie Wells has joined HF as Executive Director. Stephanie has over 35 years of fundraising, marketing and awareness experience with a variety of nonprofit organizations. Stephanie’s salary will be funded by a private, restricted donation from an HF supporter; HF will continue to be led by an all-volunteer Board of Directors. Please join us in welcoming Stephanie to our team!
READ ABOUT DR. DAVID RYE AND IH IN THIS NEWS MAGAZINE FROM INDIA!
Dr. David Rye lends his expertise about idiopathic hypersomnia and current treatments in this interesting read about sleep disorders, in the new issue of The Week, a news magazine from India. Read it HERE.
JAZZ PHARMACEUTICALS’ SURVEY HIGHLIGHTS SIGNIFICANT IMPACT OF EDS RELATED TO SLEEP APNEA
Although this new campaign is focused on people with apnea, teaching the public about excessive daytime sleepiness could ultimately be helpful to people with IH, too. Read more HERE.
SHARE YOUR PERSONAL JOURNEY
Has your life been impacted by idiopathic hypersomnia? We want to hear from you. Your story may resonate with someone struggling with IH and bring them hope. Click HERE to share your personal journey. (Note: we can keep your identity confidential.)