SomnusNooze Articles > Raising Awareness
On June 3, 2017, Board Member Amy Haraden participated in a Patient Panel at the SLEEP2 (PCORI) Conference organized by Project Sleep. SLEEP2 is a project co-led by the University of Arizona, the Sleep Research Network, and Project Sleep and is funded by the Patient-Centered...
Continue ReadingThe Hypersomnia Foundation has a lot going on right now, and there are many ways to show your support! Donate Our 2017 Fall Fundraiser is underway. With your donations, HF has been able to launch and maintain a patient registry to aid research; hold annual conferences; update,...
Continue ReadingIn 2014, the Hypersomnia Foundation (HF) published a brochure written for people with idiopathic hypersomnia and their supporters. Since that time, over 3,500 brochures have been sent to physicians’ offices, at their request, for distribution. We have also distributed HF brochures at conferences to help...
Continue ReadingNOTE: this is part 3 of a 3 part series. For Part 1, click HERE. For Part 2, click HERE. I want to add a postscript to my Personal Journey story that appeared in the July 2017 edition of the HF’s SomnusNooze. It relates to the...
Continue ReadingThe Hypersomnia Foundation (HF) is thrilled to announce its attendance at the World Sleep Congress (WSC), hosted by the World Sleep Society, October 7 to 11, 2017 in Prague. The Congress is well attended by world clinical and scientific sleep medicine experts. Board members Diane Powell...
Continue ReadingIt’s often a struggle to describe to others – sometimes to doctors – the essence of idiopathic hypersomnia. Now, the Hypersomnia Foundation presents Idiopathic Hypersomnia Standard Characteristics. This one-page document, reviewed and approved by our Medical Advisory Board, summarizes the common characteristics of IH. We hope...
Continue ReadingBY: Karen Berger – MN-USA NOTE: this is part 2 of a 3 part series. For Part 1, click HERE. For Part 3, click HERE. I have had idiopathic hypersomnia (IH) since I was 15 and was finally diagnosed 11 years ago. Since then I have been...
Continue ReadingAAN is the American Academy of Neurology, and the meeting was held in Boston, MA, April 22-28, 2017. The AAN Annual Meeting is the world's largest gathering of neurologists, bringing together more than 10,000 neurology professionals across the globe to network, discuss cutting-edge research, and...
Continue ReadingA “Dear Abby” advice column was recently forwarded to us by Noelle, a member of the hypersomnia community. In a letter to Abby, a mother in New Jersey asked what to do about her teenaged son’s complete inability to get himself up for school in...
Continue ReadingHypersomnia Foundation’s Catherine Page-Rye will be live on Top Docs Radio, Tuesday April 18 at noon EDT. If you missed the live show, you can download it here. Cat aims to promote awareness and better understanding of idiopathic hypersomnia (IH) as a rarely diagnosed, often misunderstood, serious neurological...
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