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 conferences and hosting educational events, sponsoring a hypersomnia-specific patient registry whose data is available to researchers, and providing physicians, sleep professionals, individuals and their families with free educational and other sleep disorder-specific support materials.

The Hypersomnia Foundation (HF) continues to provide information, resources, and support to the sleep disorder community through our website, social media, email, and our SomnusNooze e-newsletter.

Recent highlights include:

• In partnership with Jazz Pharmaceuticals, we launched “I Have IH,” a disease awareness campaign that aims to increase understanding of the debilitating sleep disorder, idiopathic hypersomnia (IH), and empower patients to recognize their symptoms and improve conversations with their care teams. The Hypersomnia Foundation is committed to bringing more awareness to IH and other serious sleep disorders and helping people with these conditions at every stage of their journey—from education and diagnosis to treatment and patient assistance. By generating awareness about idiopathic hypersomnia, the “I Have IH” campaign aims to encourage those who may be struggling with the sleep disorder to have effective discussions with their supporters and healthcare providers about their condition. The campaign kicked-off with an “I Have IH” billboard in Times Square! We also worked with our Patient Advisory & Advocacy Council (PAAC) developing a series of helpful ways to discuss IH with family and friends.

• We increased outreach through our free virtual webinars, workshops and Meet & Greet events.  In January, we hosted the first in our “Your Best Self” series of education events, “Your Best Self: New Ways of Thinking About Disability & Support.” In June, we hosted our second event in the series, “Your Best Self: Getting Your Meds!”- a virtual workshop on reducing out of pocket costs for prescription medications and how to appeal insurance denials. We also hosted our second virtual Meet & Greet, “Self-Advocacy: Getting Your Best Care,” an interactive workshop led by the Founder of the Hypersomnia Alliance and two Hypersomnia Foundation Board members. We also presented an educational event, “Diagnosing Hypersomnia Differently: A European Proposal,” hosted by a medical representative from the Leiden University in the Netherlands who shared a recent proposal for changing the diagnosis and categorization of both narcolepsy and idiopathic hypersomnia.

• On June 12, we held our inaugural Sleep/Wake Cyclers fundraiser. Team members rode bicycles, motorcycles, stationary bikes – we even had quite a few walkers and runners – who spent the day raising awareness of sleep disorders while also raising money for research. We had Sleep/Wake Cycler team members throughout the United States, Canada, England, and Vietnam. Over $14,000 was raised!

Over the past months, we have accomplished the following:

• We launched three new webpages: "Birth Control, Menstruation & Menopause: Considerations for People Who Have Hypersomnia," "Parenting & Pregnancy: Considerations for People Who Have Hypersomnias," and "Disability and Health & Prescription Medicine Insurance."

• We have grown our hypersomnia-focused patient registry at CoRDS (Coordination of Rare Diseases at Sanford) to over 2,850 participants (from nearly 30 countries) creating a vital database for researchers to use as they work to better understand symptoms, treatments and the diagnostic journey of individuals suffering from rare sleep disorders. 

• We welcomed two new members to our Board of Directors. One is an experienced patient advocacy manager, health equity and inclusion advocate, and public health educator, with more than half of her professional career dedicated to working with rare disease patient communities. The other is a parent of two adult children with sleep disorders and is committed to support research efforts for finding a cure and to raise awareness so others will not feel isolated in their situations.

• We continue to share important research and other news relating to rare sleep disorders via our free e-newsletter, SomnusNooze, to almost 5,000 subscribers.

• We continue to collaborate with our Patient Advisory and Advocacy Council (PAAC), comprised of individuals with IH and related disorders (and their supporters), thus helping us stay informed about issues affecting the sleep disorder community.

• We thank our Diversity, Equity and Inclusion (DEI) Task Force, a group of volunteers and HF Board members, who have been working to help HF better understand the barriers that many people face in getting a correct diagnosis of a sleep disorder. We continue to work diligently with this committee and holding listening sessions with our community as we work to incorporate DEI principles into everything we do.

• We continue to produce educational videos from presentations made by our Medical and Scientific Advisory Boards and experts in fields related to sleep medicine and provide free access to these videos through our website and YouTube channel.

• We continue to increase our Social Media outreach to 9,437 active followers, via Facebook, Instagram, Twitter and LinkedIn. Through these platforms, we actively share information about ongoing clinical trials, provide access to free resources for the sleep disorder community, promote community support groups, and encourage participation in local and national advocacy efforts to increase awareness of sleep disorders and funding for research and access to treatments.

• We continue to expand our education and awareness outreach to family physicians, medical students and residents, school counselors, and nursing associations, by providing free materials and resources to better understand and support patients and students with sleep disorders. Available on our website, our resources include: 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. The “HINT” test, a one-sheet for school counselors and family physicians to quickly recognize potential sleep disorders in students and patients. An 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. An IH-specific Medical ID 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. A Patient Self-Advocacy guide that provides tips and ideas on how to effectively advocate for the needs of those with a rare sleep disorder.

• We continue to expand 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:

• Birth Control, Menstruation & Menopause: Considerations with IH
• Disability and Health & Prescription Medicine Insurance
• Hypersomnia Foundation Videos and Podcasts