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 disorders.
The founders of HF listed the following goals in 2014, and we are proud to note the progress towards or the achievement of each of these:
- Providing education for people with hypersomnia, medical professionals, and scientists. 2017: HF has distinguished Medical and Scientific Advisory Boards of physicians and researchers who carefully vet the information we disseminate on idiopathic hypersomnia and related disorders. We publish a monthly e-newsletter, communicate through social media, provide speakers, hold annual conferences, and provide an educational brochure, web pages, and handouts.
- Representing people with hypersomnia at medical meetings, with pharmaceutical companies, with sleep-related organizations, and at the National Institutes of Health. 2017: HF Board members attend medical meetings (such as the World Sleep Congress October 2017 in Prague). We communicate the needs of the IH community to pharmaceutical companies and NIH.
- Hosting conferences. 2017: HF has held three annual conferences, in Atlanta, Denver and Boston. 2018: Conference in Baltimore, June 2-3
- Establishing a hypersomnia patient registry. 2017: Last year HF launched our registry for people with IH and related disorders through CoRDS (Coordination of Rare Diseases through Sanford Research). Nearly 1,000 people with these rare disorders have shared their data with the registry to aid research.
- Funding research to identify the cause of and effective treatments for hypersomnia. 2017: HF has established and continues to build a restricted fund for research.
Through the incredible generosity of our donors, we have achieved all this and more in just a few short years! We 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 have donated, and continue to donate, to the mission and the work of the Hypersomnia Foundation.