Sleeping/Napping in Your Car Safely
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.
Although we are all still in the midst of the COVID-19 pandemic, the Hypersomnia Foundation (HF) continues to provide information, resources, and support to the rare sleep disorder community through our website, social media, email, and our SomnusNooze e-newsletter.
In January, we hosted “Your Best Self: New Ways of Thinking About Disability & Support,” the first in our 2021 Your Best Self series of education events. This interactive, 90-minute virtual program featured a presentation by an HF Board member who is a prominent disability attorney who has represented numerous people with IH applying for disability. She shared her observations of the emotional aspects of that journey and how to manage any potential hurdles. Our program also featured a presentation by the founder of the Hypersomnia Alliance, a highly successful patient advocate in the IH community, who also co-organizes the “Snooze Cruise” retreats, and facilitates a support group in Atlanta. She shared what makes a support group successful, and the details of organizing virtual and in-person groups.
This spring we will be presenting “Your Best Self: Maneuvering Through the World of Insurance and Prescription Drugs,” the second event in our 2021 Your Best Self education series.
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 2,650 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. According to a publication from the Agency for Healthcare Research and Quality Research, “Patient-powered registries and patient-powered research networks offer new directions for patient-centered outcomes research, and contribute to translational science in important ways. Experts agree that these registries are transforming patient/caregiver support and advocacy groups into research organizations. They also provide patients and family members another way to become engaged in research beyond the role of advisor or informant to researcher-generated studies.”
-- We welcomed a new volunteer to our organization. Joining the Leadership Team as our UK Liaison is a medical student at the University of Buckingham in England who discovered the Hypersomnia Foundation while searching for information and support after being diagnosed with Idiopathic Hypersomnia (IH)/Type 2 Narcolepsy. She said that the Hypersomnia Foundation equipped her to understand, manage and move forward with IH, giving her the confidence to continue her pursuit of a career in medicine and as a volunteer, greatly looks forward to increasing awareness of IH and advocating and providing support for those affected by it and similar conditions.
-- We launched a new webpage describing the safety concerns of sleeping/napping in cars along with advice on how to minimize the risks. Topics covered include:
- Legal and safety issues to consider when choosing where to park
- Minimizing risk in an encounter with police or passersby
- Avoiding carbon monoxide poisoning if sleeping with the HVAC system running
-- We are recruiting riders for our Sleep/Wake Cyclers bike team that will be riding for research on idiopathic hypersomnia and related sleep disorders. Whether you ride two miles or 200, ride on a bike trail, around your neighborhood, on a stationary bike in your living room, or across the country on your Harley, everyone is welcome to join the team for our inaugural ride on June 12, 2021.
-- We continue to share important research and other news relating to rare sleep disorders via our free e-newsletter, SomnusNooze, to almost 4,900 subscribers.
-- We continue to increase our Social Media outreach to 8,735 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 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.
Sleep/Wake Cyclers Bike Team
CoRDS International Patient Registry
Hypersomnia Foundation's Virtual Event