- PASSION: We give voice to the significant unmet needs of the hypersomnia community, continuously striving to realize our dream of a cure.
- VALIDATION: We understand what it is like to live with an invisible disease. When you share your story, we believe you.
- INCLUSIVENESS: We believe all people with hypersomnias deserve timely diagnosis and effective treatment in order to live a healthier, more fulfilling life.
- PARTNERING: We strive to connect our patient community to multiple stakeholders who are critical to improving the lives of people with central hypersomnias. Clinicians, researchers, pharmaceutical companies, educators, regulators and legislators benefit from strong ties to each other and the patient community.
- TRUST: We are a trusted source of medical information for people with hypersomnia, their physicians and the general public. Your donations and shared medical information are fully protected and used only in accordance with your wishes.
- DEDICATION: Our team of volunteers and employees devote their time and professional skills—with unwavering focus—to the best interests of the hypersomnia community.
Our Goals and Achievements
- Providing high-quality, timely information to people with hypersomnias, their supporters and health care providers.
In June 2020, HF unveiled a new website, which was reorganized to improve access to our wealth of free resources designed to meet the needs of people with hypersomnias and the people around them who are essential in their care. The website included new pages designed specifically for 1) Newly Diagnosed; 2) Patients & Supporters; 3) and Healthcare Providers.
In the preceding years, we made significant updates to our pages on the Classification and Treatment of hypersomnias, prepared by Dr. Lynn Marie Trotti, the Chair of our Medical Advisory Board. We updated our IH Summary to include diagnostic criteria, along with the characteristics of IH. Several new guides and tools were developed for our Education Essentials for Students webpage, providing a wealth of information for maximizing student success while living with a hypersomnia. And we developed many new resources, including How to Choose a Healthcare Provider, a Medical Alert Card, an Anesthesia and IH Guide, a Self-Advocacy Tips handout, and more (see the Resources tab on the HF homepage). Conferences and in-person educational forums for people with hypersomnias and their supporters are another important avenue for sharing information and building up the patient community. For the safety and well-being of our patient community, presenters, and others, HF’s 2020 conference, planned for June in Philadelphia, was cancelled due to the COVID-19 pandemic. During the most recent year, 2019, HF sponsored educational events in Seattle and Chicago. Since 2015, HF has held four conferences—in Atlanta (2015), Denver (2016), Boston (2017) and Baltimore (2018). Our seminal Baltimore conference, in particular, gathered some of the world’s top hypersomnia experts and cutting-edge researchers. It was very well-attended and raised the profile of IH and related disorders among pharmaceutical companies, researchers, and sleep medicine professionals.
We continuously share our free resources, conference videos, research updates, personal journey stories, and more via an e-newsletter, an expansive social media footprint, and other events. As always, HF is the leading nonprofit providing hypersomnia information and resources for patients, their supporters and medical professionals.
- Increasing awareness and knowledge of hypersomnias in medical and educational communities in order to reduce time to diagnosis.
HF has regularly exhibited and participated in preeminent sleep medicine conferences, such as APSS’s SLEEP (in the U.S.) and the World Sleep Congress. Our presence and advocacy efforts at these events raises awareness of IH and related sleep disorders in the clinician population. Since the foundation of HF in 2014, we’ve noted a distinct increase in conference presentations on the subject of idiopathic hypersomnia. Although we have a long way to go, we are encouraged by the signs that awareness in IH and related sleep disorders is growing.
As an example of increasing interest in IH by clinicians, the inaugural conference of the Society of Behavioral Sleep Medicine (fall 2019) included a lecture and patient panel on IH. Both events were recorded for continuing education efforts among their membership. In the spring of 2020, the Southern Sleep Society organized another lecture on IH, with a patient panel provided by HF, (although the conference had to be cancelled and tentatively rescheduled for November 2020).In 2019, HF made new inroads into raising awareness through exhibiting at the conferences of professionals most likely to come in contact with sleepy people: namely, school counselors, college health providers, family medical practitioners and others. The goal of this initiative is to educate these professionals about sleep disorders, in the hope of ultimately reducing the number of people who go undiagnosed and reducing the length of time to diagnosis.
Our new website launched in June 2020 supports our efforts to educate both medical and educational professionals in the identification and treatment of IH and related disorders. A customized web page for healthcare providers supplies easy access to the information they need all in one place. An extensive Education Essentials webpage provides numerous tools for educators, patients and families to work together to provide the best possible educational experience for those with IH or related sleep disorders.
- Building communities and fostering relationships between the patient community and scientific, industrial and government organizations.
Our attendance at prominent sleep conferences has also resulted in building new relationships in the sleep research community. The annual APSS SLEEP conference and the biennial World Sleep Congress are key opportunities to meet with prominent sleep researchers from across the globe. In addition to conferences, both HF leadership and members of our Medical Advisory Board have reached out to individual sleep researchers with the goal of increasing interest in research in hypersomnias, particularly for those with IH and narcolepsy type 2 that do not respond to currently available medications. At the 2019 World Sleep Congress in Vancouver, Canada, HF hosted an event organized by Medical Advisory Board members Dr. David Plante and Dr. Lynn Marie Trotti, bringing together for the first time a group of 22 international researchers interested in hypersomnia research. Going forward, HF intends to explore how this group may grow and work together to further the scientific discoveries to improve the lives of those with hypersomnias.
In 2019-2020, HF has begun forming relationships with other organizations critical to the research process and bringing new drugs to market. We joined NORD (National Organization for Rare Disorders), an organization with strong ties to the FDA and pharmaceutical companies that helps rare disease patient organizations better serve their communities. HF leaders have also begun forming relationships with key individuals at the NIH and FDA, in preparation for future advocacy efforts for critical research programs or drug approvals.
- Supporting the discovery of scientific breakthroughs on the causes and treatments of central hypersomnias.
The new HF website launched in June 2020 introduced a web page dedicated to the researcher and pharmaceutical communities. This page gathers up-to-date information on IH and related disorders, ongoing clinical trials, key research findings, and more.
As of July 2020, more than 2,200 people with rare sleep disorders have shared their data with our International Patient Registry housed at CoRDS (Coordination of Rare Diseases at Sanford), which is based at Sanford Research. This registry is free to both patients and researchers. The data has already been accessed by hypersomnia researchers who are working to understand more about causes, symptoms and treatment. In addition, it is a key resource for recruiting people for clinical trials.
HF recently expanded our Research Award Program, made possible by our generous donors. Through this program, investigators receive monetary awards to fund projects with the potential to provide insights into IH and related sleep disorders and improved treatments. HF’s first recipients are Dr. Caroline Maness of Emory University and Dr. Todd Bishop of the Veterans Health Administration.
- Translating new discoveries into improved outcomes and quality of life for people with hypersomnias.
During the past few years, HF has formed relationships with several pharmaceutical companies working in the rare sleep disorder space, in order to share the needs of our community and to advocate for new and improved treatments. HF, in turn, keeps our community informed when there are opportunities for people with IH and related sleep disorders to enroll in clinical trials. During 2019-2020, the majority of our efforts in this arena are directed towards the successful execution of clinical trials for three medications being tested in IH:
- JZP-258, a low sodium alternative for Xyrem (Jazz); and
Through the incredible generosity and passion of our donors, HF has made significant achievements since its 2014 inception! We will continue to grow and expand the founders’ vision for HF to make a positive impact on the lives of people with IH and related disorders.