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 taking part 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.

Here’s what the Hypersomnia Foundation has been doing:

REGISTER FOR THE HYPERSOMNIA FOUNDATION 2024 #BEYONDSLEEPY CONFERENCE 

Mark your calendar! The Hypersomnia Foundation will be hosting the 2024 #BeyondSleepy conference from May 31 through June 2 in Houston, Texas. This multi-day event is for people with idiopathic hypersomnia, narcolepsy, and Kleine-Levin syndrome and their supporters.

A wonderful mix of speakers has been scheduled for sessions discussing the latest in research, treatments, and clinical trials. The conference will include multiple breakout workshops, networking events, and an evening meet-and-greet reception. If you can’t make it to Houston, you can join virtually.

For more information and registration, visit the Events section of the Hypersomnia Foundation website.

UNIGHT – DISCUSS. CHARE. CONNECT. 

On the last Monday of every month, the Hypersomnia Foundation hosts a FREE virtual get together for people with sleep disorders, their families, and caregivers. It’s a great opportunity to have a casual, open dialogue with sleep specialists on topics relevant to the sleep community and for everyone to discuss, share, connect and just be ourselves. More information and registration for these monthly virtual get-togethers are on our website.

The most recent UNIGHT events have covered the following topics:

“Treatment Options for Idiopathic Hypersomnia” – Discussion was led by a child neurologist and sleep medicine specialist at Boston Children’s Hospital who is also an assistant professor of neurology at Harvard Medical School and a member of the Hypersomnia Foundation’s Medical Advisory Board.

“Navigating the Disability Process” – Information was provided by an attorney specializing in disability law who is also a member of the Hypersomnia Foundation’s Board of Directors.

“Novel Diagnostic and Therapeutic Strategies for Hypersomnia” – The meeting was led by an associate professor of psychiatry at the University of Wisconsin School of Medicine and Public Health and serves as the chair of the Hypersomnia Foundation’s Medical Advisory Board.

“Balancing Relationships in Central Disorders of Hypersomnolence” – Discussion was led by a psychologist and sleep specialist in private practice in New York who is also board certified in Behavioral Sleep Medicine.

OUTREACH HIGHLIGHTS

Hypersomnia Foundation Continues with YouTube Series "LIVING WITH..." – The Hypersomnia Foundation’s monthly YouTube series, "LIVING WIITH..." expands awareness of idiopathic hypersomnia, healthy sleep habits, emerging research in sleep medicine, and more. Hosted by Hypersomnia Foundation’s CEO, each episode features in-depth conversations with sleep experts, researchers, clinicians, and people with IH, centering on the realities of people living with idiopathic hypersomnia. Subscribe to our YouTube Channel (@hypersomniafoundation) to keep up to date on the latest episodes! 

The Hypersomnia Foundation is on TikTok – Follow us on TikTok (@hypersomniafoundation) to share and connect with others in the sleep disorder community. Get helpful hints, information, updates, and stories about living with idiopathic hypersomnia. Add us to your social media favorites! 

HYPERSOMNIA FOUNDATION PROVIDES FUNDING TO TWO NEW RESEARCH PROGRAMS

NeuroImaging Consortium on Central Disorders of Hypersomnolence – The Hypersomnia Foundation is pleased to have granted one-year of funding for the research project entitled: NeuroImaging Consortium on Central Disorders of Hypersomnolence (NICHY): Using global mega-analysis to identify new biomarkers and neural mechanisms associated with central hypersomnolence phenotypes. The NICHY project will commence a large-scale, international collaboration that will make use of the power of numbers, by pooling together smaller cohorts of neural imaging data in people with central disorders of hypersomnolence. This approach is unprecedented in the field of central disorders of hypersomnolence and will lead to real breakthroughs in the identification of neural biomarkers and mechanisms of these disorders. The NICHY consortium members for this research project are a collaboration of established researchers in the field of central disorders of hypersomnolence. 

2023 Strategic Research Grant: Central Disorders of Hypersomnolence Research – The Hypersomnia Foundation has partnered with the AASM Foundation and will co-fund one research grant received for the 2023 Strategic Research Grant: Central Disorders of Hypersomnolence Research. The grant is investigator-initiated and supports high-impact research projects aimed at addressing gaps in knowledge that impact the ability to provide optimal, patient-centered, cost-effective diagnosis and care for patients with sleep disorders to ensure that there is a continued advancement in effective diagnosis and care of patients with sleep disorders. The Hypersomnia Foundation is proud to partner with the AASM Foundation, who is committed to improving patient-centered diagnosis and care for all patients with sleep disorders. Learn more about the 2023 Strategic Research Grant program HERE.

Over the past months, we have continued supporting the sleep disorder community with the following:

– We have grown our hypersomnia-focused patient registry at CoRDS (Coordination of Rare Diseases at Sanford) to over 3,800 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.” Read highlights in the CoRDS Summary Report. 

– We continue to share important research and other news relating to 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 9,748 active followers, via Facebook, Instagram, Twitter, LinkedIn, and TikTok. 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 online Healthcare Provider Directory of physicians and sleep specialists experienced in the treatment of people with hypersomnias.

– 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.
• The Idiopathic Hypersomnia Severity Scale - a questionnaire designed specifically to measure IH symptoms and serve as a useful tool for patient identification, follow-up visits, and IH management.

We are grateful for the generosity of so many who believe in and support our mission and work. All people with hypersomnia deserve full and proper treatment. Optimal diagnosis and treatment derive from better knowledge and increased awareness. Your donations help us increase awareness of idiopathic hypersomnia and through outreach, education, and research. 

Thank you for your continued support!

Links:

• Follow the Hypersomnia Foundation on Facebook