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.
2019: HF’s distinguished Medical and Scientific Advisory Boards of physicians and researchers carefully vet the information we disseminate on idiopathic hypersomnia and related disorders. Our website includes a wealth of information and resources for both laypeople and professionals, including a series of education guides for students, a medical alert card, an informational brochure, and most recently, a guide to help people with IH work with their providers to prepare for procedures involving anesthesia. We also share all of these resources, research updates and personal journey stories via a monthly e-newsletter, an expansive social media footprint, our conferences 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.
2019: HF is organizing lectures and a patient panel for the first annual conference of the Society of Sleep Behavioral Medicine (fall 2019). HF exhibits and participates in educational forums at the APSS (the annual U.S. sleep medicine conference) and the World Sleep Congress. Our Industry Outreach Officer has expanded our opportunities to meet with pharmaceutical companies in the rare sleep disorder space, to share the needs or our community and to advocate for new treatments. HF, in turn, keeps our community informed when there are opportunities for people with IH and related disorders to enroll in clinical trials. HF recently added a dynamic Legislative Advocacy volunteer, based near Washington, D.C., who has already begun to communicate the needs of our community to NIH, to legislators and others. HF actively seeks opportunities to partner with other sleep disorder nonprofits and rare disease organizations, where collaboration can lead to greater benefits for our community.
3. Host conferences.
2019: HF has held four conferences, in Atlanta (2015), Denver (2016), Boston (2017) and Baltimore (2018). Our seminal Baltimore conference, in particular, gathered top experts and cutting-edge researchers, and was well-received by people with IH and related disorders, their loved ones, pharmaceutical companies, and sleep medicine professionals.
This year, HF is making new inroads into raising awareness through exhibiting at the conferences of professionals most likely to come in contact with sleepy people: school counselors, college health providers, family medicine practitioners, and others. We believe that raising awareness among these professionals can increase referrals for evaluation for sleep disorders and ultimately reduce the time between onset of symptoms and diagnosis, and reduce the number of people who are undiagnosed and struggling.
In addition, HF is holding our first West Coast event: a Patient Education Meeting in Seattle, Washington, on June 29th, 2019.
4. Establish a hypersomnia-specific patient registry.
2019: HF launched a registry in 2016 for people with IH and related disorders, housed at CoRDS (Coordination of Rare Diseases through Sanford Research). More than 1,600 people with rare sleep disorders have shared their data with the registry to aid research! The registry is free to both patients and researchers. The data has been accessed by researchers, who are working to understand more about causes, symptoms and treatments.
Progress in research since the registry questions were developed in 2015 is shaping plans for a stage two of the registry. HF is reaching out to key stakeholders to determine what patient information is most likely to help move research forward.
5. Fund research to identify the causes of and effective treatments for IH.
2019: HF established a research award program in 2018. Through this program, investigators can receive monetary awards to fund projects with the potential to provide insights into IH and related disorders and improved treatments. HF is currently vetting applications and the first award(s) are expected to be announced this year.
Through the incredible generosity and passion of our donors, HF has made significant achievements in just five short 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.