Hypersomnia Foundation--Awareness and Education

Project Summary: The Hypersomnia Foundation is committed to increasing awareness of idiopathic hypersomnia (IH) in both the public arena and the medical community through outreach, education, awareness, and research. The Foundation does this, in part, through actively participating in nationwide sleep conferences and educational events, sponsoring a hypersomnia-specific patient registry whose data is available to researchers, and providing individuals and their families with free educational and other support materials.

 The Hypersomnia Foundation has successfully: 

• Collaborated with representatives from Project Sleep, Wake Up Narcolepsy, Narcolepsy Network, and the Sleep Research Society at the “Sleep Community Capitol Hill Advocacy Day” in Washington, D.C. advocating for increased sleep disorder research at the NIH, VA, and DoD.
• Increased our outreach in the sleep disorder and medical research community by participating in multiple sleep-related conferences, outreach and educational events in the U.S. and Canada.
• Held two Hypersomnia Educational Meetings – one in Seattle and the other in Chicago with over 100 attendees at each event.
• Expanded our education and awareness outreach to include family physicians, medical students and residents, school counselors, and nursing associations.
• Created a downloadable Patient Self-Advocacy brochure.
• Surveyed over 325 individuals about challenges and obstacles they may be experiencing with insurance coverage for IH prescription drugs, providing vital information for our Patient Advocacy Outreach Officer.
• Awarded our first “Research Award” to Dr. Caroline Maness of Emory University for her proposal entitled “Investigating Cytokine Profiles in the Central Disorders of Hypersomnolence.”
• Grown our hypersomnia-focused patient registry at CoRDS (Coordination of Rare Diseases at Sanford) to over 2,000 participants, thereby collecting vital information for researchers.
• Created a series of downloadable Educational Guides for K-12 through College for students with IH and related sleep disorders, as well as their parents and school officials.
• Created a downloadable one-sheet for school counselors and family physicians to quickly recognize potential sleep disorders in students and patients.
• Developed a downloadable Anesthesia Guide for people with IH to share with their medical teams before surgery, and a Patient Care Plan that can be individualized for each person.
• Crafted a downloadable IH-specific Medical Alert Card that both alerts medical personnel that the person has IH and educates the medical personnel as to what IH is and how it can interact with anesthesia and other drugs.
• Continued to share important research and other important news relating to hypersomnia via our monthly newsletter, SomnusNooze, to almost 4,500 subscribers.
• Supported scholarships for five college-bound students with IH through a partnership with Project Sleep.
• Collaborate through monthly meetings with our patient advisory board, comprised of individuals with IH and related disorders (and their supporters), thus helping us stay informed about issues affecting the sleep disorder community.
• Increased our Social Media outreach to over 5,700 active followers, via Facebook, Instagram, Twitter and LinkedIn.
• Committed to support five families with a child with IH to attend a family summer camp specifically for children with sleep disorders through a partnership with Wake Up Narcolepsy.
• Produced monthly educational videos from presentations made by our Medical and Scientific Advisory Boards.
• Expanded our online Healthcare Provider Directory of physicians experienced in the treatment of people with hypersomnias.

All people with hypersomnia deserve full and proper treatment. Optimal diagnosis and treatment derive from better knowledge and increased awareness. Your donations will help us increase awareness of idiopathic hypersomnia through outreach, education and research.

Links:

• Hypersomnia Foundation "SomnusNooze" Monthly Newsletter
• Hypersomnia Foundation Videos and Podcasts
• Hypersomnia Foundation CoRDS International Patient Registry