Our Core Beliefs
- ALL people with hypersomnia deserve full and proper treatment.
- Optimal diagnosis and treatment derives from better knowledge.
- All of the causes of hypersomnias can be discovered and properly treated.
- Through research, it will one day be possible to predict, prevent, and personalize treatment for hypersomnias.
- To increase community and physician awareness of idiopathic hypersomnia (IH) and the related sleep disorders (hypersomnias).
- To provide a source of high-quality, timely education and resources regarding IH for people with hypersomnia, their supporters, and healthcare providers.
- To promote much needed research into the causes and treatments of IH, with a special focus on novel ideas with excellent potential for transforming care of people with hypersomnia.
- To assist in translating new discoveries into improved outcomes and quality of life for people with hypersomnia.
Our History and Our Achievements
In 2014, the Hypersomnia Foundation was incorporated as a 501(c)(3) nonprofit organization to advocate, educate, and provide resources for research on behalf of people affected by idiopathic hypersomnia and related sleep disorders.
The founders of HF listed the following goals in 2014, and we are proud to note our steady progress to realize all of these:
1. Provide education for people with IH and related sleep disorders, medical professionals, and scientists.
2020: In July HF unveiled a new website, which was reorganized to improve access to our wealth of free resources, and which included updated pages on the diagnosis and treatment of hypersomnias, prepared by Dr. Lynn Marie Trotti, the Chair of our Medical Advisory Board. We’re excited about the new site, which will continue to expand to include information on insurance and disability issues later this year. As always, HF is the leading nonprofit providing hypersomnia information and resources for patients and their supporters, medical professionals, and researchers. We also share these free resources, research updates and personal journey stories via a monthly e-newsletter, an expansive social media footprint, and other events.
2. Represent people with IH and related disorders at medical meetings, with pharmaceutical companies, with sleep-related organizations, at the National Institutes of Health, and more.
2020: At the request of the organizers of the Southern Sleep Society, HF organized a lecture and a patient panel for the Society’s meeting, originally scheduled for March of this year. That event was cancelled due to the Covid-19 pandemic, and is tentatively rescheduled for this November.
In the fall of 2019, HF was pleased to provide a lecture and patient panel for the first conference of the Society of Sleep Behavioral Medicine. In addition, HF has regularly exhibited and participated in sleep medicine conferences such as APSS Sleep (in the US) and the World Sleep Congress.
Indeed, at the 2019 World Sleep Congress in Vancouver, Canada, HF hosted and was instrumental in forming the Idiopathic Hypersomnia Investigative Group (IHIG), the first international researchers’’ group specifically focused on IH.
We have also successfully forged opportunities to meet with 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 hypersomnia and related sleep disorders to enroll in clinical trials.
3. Host conferences.
2020: For the safety and well-being of our patient community, presenters, and others, HF’s conference – planned for June in Philadelphia – was cancelled due to the COVID-19 pandemic. Last year, HF held patient education days in Seattle (our first West Coast event) and in 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 the world’s top hypersomnia experts and cutting-edge researchers. It was well-attended and raised the profile of IH and related disorders among pharmaceutical companies, researchers, and sleep medicine professionals.
Also 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 was 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 that such diagnoses take.
4. Establish a hypersomnia-specific patient registry.
2020: More than 2,000 people with rare sleep disorders have shared their data with the 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 treatments.
5. Fund research to identify the causes of and effective treatments for IH.
2020: HF recently expanded our Research Award program, made possible by donations to our restricted research fund. 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 Veteran’s Administration.
Through the incredible generosity and passion of our donors, HF has made significant achievements in just over six years! We will continue to grow and expand the founders’ vision for HF to make a positive impact in the lives of people with IH and related disorders.
Thank you! to all those who donate time, talent and treasure to the mission and the work of the Hypersomnia Foundation.
Please consider making a donation today. Every contribution, of any size, is deeply appreciated.