CoRDS dataset used for research paper
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 physicians, sleep professionals, individuals and their families with free educational and other sleep disorder-specific support materials.
Although we are all still in the midst of the COVID-19 pandemic, the Hypersomnia Foundation (HF) has continued to provide information, resources, and support to the rare sleep disorder community. Now more than ever, we are grateful to be able to stay in touch with our community through social media, SomnusNooze, email, and most recently, with a virtual educational event. The all-volunteer HF Board, which has always worked remotely, continues their efforts to support our community, especially in these uncertain times.
Due to COVID-19, we cancelled our plans to attend multiple sleep-related conferences, outreach and educational events, and unfortunately, had to cancel the Hypersomnia Foundation conference planned for June 2020 in Philadelphia. Adapting to the new normal and pressing forward on behalf of everyone in our community, we recently held our first virtual educational event – “The Research Continues” – an interactive, 90-minute virtual program, during which hypersomnia experts from both the research and the pharmaceutical sides shared updates for current and ongoing research studies and clinical trials. We will continue to work on behalf of our community and look forward to scheduling virtual conferences and multiple educational events in the near future.
Over the past months, we have accomplished the following:
-- We have grown our hypersomnia-focused patient registry at CoRDS (Coordination of Rare Diseases at Sanford) to over 2,450 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. Using this valuable CoRDS dataset, a research paper, “Disease Symptomatology and Response to Treatment in People with Idiopathic Hypersomnia: Initial Data from the Hypersomnia Foundation Registry," was published. We provided on our website, a summary of the key findings of this research.
-- We held our first virtual Hypersomnia Educational event – “The Research Continues." Over 200 people registered for the live event and tuned-in via Zoom to listen to and participate in live Q&A with our presenters. Event presentations included:
- HF's 2019 Research Award recipient provided an update on her research “Cytokine Profiles in the Central Disorders of Hypersomnolence.”
- HF's 2020 Research Award recipient provided an update on his research “Hypersomnia and Our Heroes: Studying IH and Behavioral Disorders in the U.S. Veteran Population.”
- An HF volunteer shared her personal experiences in “Christina’s Story: Volunteering for IH Clinical Trials.”
- A pharmacist from a major pharmaceutical firm provided updates on research studies in “Unlocking Pharmaceutical Discoveries: Developing Meaningful Treatments that Address Patient Needs.”
-- We welcomed two new members to our Board of Directors.
- Joining our Board is an attorney who specializes in the areas of Social Security Disability Law for adults and children, Veterans Disability and Guardianships. She has been a guest speaker at multiple HF conferences discussing her expertise on advising clients, including idiopathic hypersomnia patients, on their rights and obligations with respect to long-term disability. She has also written articles on Social Security Disability for our newsletter SomnusNooze and will serve as a strong advocate for those with IH and related sleep disorders,
- Also joining our Board is the Chief Technology Officer at Upic Solutions, a non-profit service organization for United Way. Diagnosed with IH in his 20s, he is dedicated to increasing awareness of idiopathic hypersomnia and helping others navigate through their sleep disorder journey. With a degree in Computer Engineering, his technology expertise will greatly benefit our efforts for increased awareness of IH and improved options for those living with a sleep disorder.
-- A Hypersomnia Foundation Volunteer and a Hypersomnia Foundation Board Member, both shared, during a live session at the Society of Anesthesia and Sleep Medicine’s 10th Annual Meeting, their personal stories of living with IH.
-- An Associate Professor of Neurology at Emory University and Chair of the Hypersomnia Foundation Medical Advisory Board, presented her poster “Recognizing and Understanding Disorders of Excessive Sleepiness in Students K-12", at the American School Health Association Virtual Conference.
-- We continue to share important research and other news relating to rare sleep disorders via our e-newsletter, SomnusNooze, to almost 4,900 subscribers.
-- We continue to increase our Social Media outreach to over 5,900 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 collaborate through monthly meetings 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 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 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.