HYPERSOMNIA FOUNDATION

The Foundation will fulfill its goals and objectives as follows:

1. Provide resources for people with hypersomnia, medical professionals, and scientists to improve understanding and coping with the disorder.
2. Represent people with hypersomnia worldwide at medical meetings, pharmaceutical companies, sleep-related organizations, and extramural funding agencies such as foundations and government institutes and councils.
3. Host an annual conference.
4. Continue expanding an international hypersomnia patient registry.
5. Continue expanding an international healthcare provider database.
5. Establish a research program specific to hypersomnia.

Strategies to accomplish our short term and long term goals include:

1. Continue to develop and grow an organized, highly productive, diverse and "hands on" Board of Directors, as well as engage all members of the Medical Advisory Board (MAB) and Scientific Advisory Board (SAB)
3. Develop, invite and engage a group of people from the hypersomnia community to help guide the HF about important issues for people living with hypersomnia.
2. Secure grants and sponsorships.
3. Grow the HF donor community.
4. Grow a presence in Social Media to bring awareness and involve the hypersomnia community about resources, research, clinical trials, etc. relating to hypersomnia.
5. Grow number of subscribers for the HF e-newsletter "SomnusNooze" that informs of happenings within the HF and hypersomnia community (including lay, industry and scientific/clinical updates, clinical trials recruiting, registries, etc.).
6. Engage Physicians and provide resources for their hypersomnia patients.

Since the HF was created in 2014 its Board of Directors has grown to include ten fully engaged, hands-on, all volunteer, working board, as well as a Medical Advisory Board (MAB) of nine chaired by Dr. David Plant, and a Scientific Advisory Board (SAB) of six chaired by Dr. Thanh Dang-Vu.

A group of 12 volunteers, People with hypersomnia and their Advocates Advisory Council (PAAC) meets monthly via phone.

The HF has a strong partnership with the Coordination of Rare Diseases at Sanford (CoRDS) managing the first ever hypersomnia specific registry.

Volunteers at the HF have applied for various grants for specific projects as well as reached out to specific industry and companies for sponsorship for conferences.

The HF has worked to grow its donor base, and has 100% participation by the HF Board in terms of donating to support the HF's mission, goals and objectives.

With this group of volunteers, consultants, and support from the hypersomnia community, the HF has put the following into place:

1. A list of resources has been developed called "Education Essentials" for K-12 and Higher Education. These are resource guides to navigate school with a relatively unknown but debilitating disorder.
2. The HF hosted Hypersomnia Conferences in 2015 (Atlanta), 2016 (Denver), 2017 (Boston), 2018 (Baltimore), 2019 (Chicago and Seattle). Historically the conferences has been well attended by professional and lay people entire the hypersomnia community (including PWIH, supporters, healthcare providers, and industry) both at a national level (those physically attending) and at a global level (via Livestream). Speakers are carefully selected to offer a wide range of information including updates on scientific discovery, novel (though off label) treatments, coping with IH in school, disability, and organized support group gatherings, and so forth.
3. Working with CoRDS staff, through social media and the HF e-newsletter (SomnusNooze), all people with rare diseases and specifically for the hypersomnia community are encouraged to complete the CoRDS and Hypersomnia Registries housed through CoRDS.
4. Continue to raise funds for future research grants.
5. The HF received a Grant from Trip Advisor Charitable Foundation to overhaul the HF website and re-create a professional branding presence.
6. The HF received a Grant for funding for an educational, scholarly reviewed paper intended to familiarize physicians, clinical scientists, specialists, pharma, and regulatory agencies about the diagnostic issues surrounding idiopathic hypersomnia.
7. The HF was selected to partner in a nationwide "I Have IH" campaign to raise awareness of idiopathic hypersomnia nationwide. Part of the campaign included a digital billboard in Times Square.
8. The HF created a Self-Advocacy brochure and website to help individuals with prescription and insurance questions and managing work accommodations.
9. During 2020, we hosted multiple virtual conferences and workshops.

1. Readership of the HF monthly e-newsletter SomnusNooze has grown from 2,400 subscribers in 2017 to over 4,500. The SomnusNooze provides information about hypersomnia; personal journey stories, vetted summaries of recent scientific journal articles, the latest information about diagnostics, coping, disability, service animals, as well as information about clinical trials, school accommodations, and updates about novel treatments.
2. In 2020 the HF launched its updated branding and overhauled website - creating a homepage that provides a straightforward description of idiopathic hypersomnia and gives an overview of the work of HF. The site is also designed to be user-friendly with search functionality, includes updated content and general information.
3.Update the content and branding of the HF brochure. These brochures are provided free of charge to healthcare professionals and support groups to distribute. The plan is to increase physician distribution of this latest brochure about IH by 10%.
4. In 2020, the HF hosted it multiple virtual conferences and workshops, designed to provide information to the lay and professional hypersomnia community about the latest research, treatments, and learn how people are coping in daily life with IH.
5. To begin to understand the true age of onset, length of time to a diagnosis, prevalence in gender within the population, treatments attempted, etc., the HF is proud to partner with CoRDS, (Coordination of Rare Diseases at Sanford (South Dakota), on a registry specific to the central disorders of hypersomnolence and related disorders. After two years of development, with the dedication of countless hours by members of our MAB, SAB and other volunteers, in 2016 the HF registry through CoRDS was launched. To date (July 2021) over 3,000 have registered and/or completed the hypersomnia portion of this registry.
6. The HF Scientific Advisory Board is working to raise awareness about hypersomnia among clinical and basic science researchers, as well as fund a sustainable research program. One key component will be a grants program that will financially support innovative research applications that are most likely to positively impact the hypersomnia community.
7. Offering information to assist parents requesting and navigating school accommodations through our "Education Essentials" series for K-12 and Higher Ed.
8. We continue to increase our outreach, education, awareness, seek funding to support research into effective treatments and better diagnostic tools for idiopathic hypersomnia and related disorders.
9. We remain a premier source of informational resources for the international sleep disorder community.
10. We continue our advocacy efforts to improve the quality of life for people with IH and related sleep disorders.