Hypersomnia Foundation--Awareness and Education

Project Summary: The Hypersomnia Foundation is committed to increasing awareness of idiopathic hypersomnia (IH) in both the public arena and the medical community through outreach, education, awareness, and research. The Foundation does this, in part, through actively participating in nationwide sleep conferences and educational events, sponsoring a hypersomnia-specific patient registry whose data is available to researchers, and providing individuals and their families with free educational and other support materials.

Although we are all still in the midst of the COVID-19 pandemic, the Hypersomnia Foundation has continued to provide information, resources, and support to the rare sleep disorder community. Now more than ever, we are grateful to be able to stay in touch with our community through social media, SomnusNooze, and email. The all-volunteer HF Board, which has always worked remotely, continues their efforts to support our community, especially in these uncertain times.

Due to COVID-19, we unfortunately had to cancel the Hypersomnia Foundation conference planned for mid-June in Philadelphia. We also cancelled our plans to attend at multiple sleep-related conferences, outreach and educational events in the U.S., but are looking forward to rescheduling a conference and multiple educational events in the future. As we adapt to the new normal, whatever that may be, we will continue to press forward on behalf of everyone in our community.

Over the past few months, we have accomplished the following:

We continue to share important research and other news relating to rare sleep disorders via our newsletter, SomnusNooze, to almost 4,700 subscribers.

We continue to increase our Social Media outreach to over 5,900 active followers, via Facebook, Instagram, Twitter and LinkedIn. Through these platforms, we actively share information about ongoing clinical trials, provide access to free resources for the sleep disorder community, promote community support groups, and encourage participation in local and national advocacy efforts to increase awareness of sleep disorders and funding for research and access to treatments.

We have grown our hypersomnia-focused patient registry at CoRDS (Coordination of Rare Diseases at Sanford) to over 2,000 individuals (from nearly 30 countries) creating a vital database for researchers to use as they work to better understand symptoms, treatments and the diagnostic journey of individuals suffering from rare sleep disorders.

We continue to expand our education and awareness outreach to family physicians, medical students and residents, school counselors, and nursing associations, by providing free materials and resources to better understand and support patients and students with sleep disorders. Available on our website, our resources include:

• A series of downloadable Educational Guides for K-12 through College for students with IH and related sleep disorders, as well as their parents and school officials;
• The “HINT” test, a one-sheet for school counselors and family physicians to quickly recognize potential sleep disorders in students and patients;
• An Anesthesia Guide for people with IH to share with their medical teams before surgery, and a Patient Care Plan that can be individualized for each person;
• An IH-specific Medical Alert Card that both alerts medical personnel that the person has IH and educates the medical personnel as to what IH is and how it can interact with anesthesia and other drugs;
• A Patient Self-Advocacy guide that provides tips and ideas on how to effectively advocate for the needs of those with a rare sleep disorder.

We continue to collaborate through monthly meetings with our Patient Advisory Board, comprised of individuals with IH and related disorders (and their supporters), thus helping us stay informed about issues affecting the sleep disorder community.

We continue to produce educational videos from presentations made by our Medical and Scientific Advisory Boards and experts in fields related to sleep medicine and provide free access to these videos through our website and YouTube channel.

We continue to expand our online Healthcare Provider Directory of physicians experienced in the treatment of people with hypersomnias.

All people with hypersomnia deserve full and proper treatment. Optimal diagnosis and treatment derive from better knowledge and increased awareness. Your donations will help us increase awareness of idiopathic hypersomnia through outreach, education and research.

Links:

• Hypersomnia Foundation Education Essentials for Students with IH
• CoRDS International Patient Registry
• Hypersomnia Foundation Information for the Newly Diagnosed

Project Summary: The Hypersomnia Foundation is committed to increasing awareness of idiopathic hypersomnia (IH) in both the public arena and the medical community through outreach, education, awareness, and research. The Foundation does this, in part, through actively participating in nationwide sleep conferences and educational events, sponsoring a hypersomnia-specific patient registry whose data is available to researchers, and providing individuals and their families with free educational and other support materials.

The Hypersomnia Foundation has successfully:

• Collaborated with representatives from Project Sleep, Wake Up Narcolepsy, Narcolepsy Network, and the Sleep Research Society at the “Sleep Community Capitol Hill Advocacy Day” in Washington, D.C. advocating for increased sleep disorder research at the NIH, VA, and DoD.
• Increased our outreach in the sleep disorder and medical research community by participating in multiple sleep-related conferences, outreach and educational events in the U.S. and Canada.
• Held two Hypersomnia Educational Meetings – one in Seattle and the other in Chicago with over 100 attendees at each event.
• Expanded our education and awareness outreach to include family physicians, medical students and residents, school counselors, and nursing associations.
• Created a downloadable Patient Self-Advocacy brochure.
• Surveyed over 325 individuals about challenges and obstacles they may be experiencing with insurance coverage for IH prescription drugs, providing vital information for our Patient Advocacy Outreach Officer.
• Awarded our first “Research Award” to Dr. Caroline Maness of Emory University for her proposal entitled “Investigating Cytokine Profiles in the Central Disorders of Hypersomnolence.”
• Grown our hypersomnia-focused patient registry at CoRDS (Coordination of Rare Diseases at Sanford) to over 2,000 participants, thereby collecting vital information for researchers.
• Created a series of downloadable Educational Guides for K-12 through College for students with IH and related sleep disorders, as well as their parents and school officials.
• Created a downloadable one-sheet for school counselors and family physicians to quickly recognize potential sleep disorders in students and patients.
• Developed a downloadable Anesthesia Guide for people with IH to share with their medical teams before surgery, and a Patient Care Plan that can be individualized for each person.
• Crafted a downloadable IH-specific Medical Alert Card that both alerts medical personnel that the person has IH and educates the medical personnel as to what IH is and how it can interact with anesthesia and other drugs.
• Continued to share important research and other important news relating to hypersomnia via our monthly newsletter, SomnusNooze, to almost 4,500 subscribers.
• Supported scholarships for five college-bound students with IH through a partnership with Project Sleep.
• Collaborate through monthly meetings with our patient advisory board, comprised of individuals with IH and related disorders (and their supporters), thus helping us stay informed about issues affecting the sleep disorder community.
• Increased our Social Media outreach to over 5,700 active followers, via Facebook, Instagram, Twitter and LinkedIn.
• Committed to support five families with a child with IH to attend a family summer camp specifically for children with sleep disorders through a partnership with Wake Up Narcolepsy.
• Produced monthly educational videos from presentations made by our Medical and Scientific Advisory Boards.
• Expanded our online Healthcare Provider Directory of physicians experienced in the treatment of people with hypersomnias.

All people with hypersomnia deserve full and proper treatment. Optimal diagnosis and treatment derive from better knowledge and increased awareness. Your donations will help us increase awareness of idiopathic hypersomnia through outreach, education and research.

Links:

• Hypersomnia Foundation Educational Videos
• IH Summary: Characteristics & Diagnostic Criteria
• Hypersomnia Foundation 2020 Conference

Project Summary: The Hypersomnia Foundation is committed to increasing awareness of idiopathic hypersomnia (IH) in both the public arena and the medical community through outreach, education, awareness, and research. The Foundation does this, in part, through actively participating in nationwide sleep conferences and educational events, sponsoring a hypersomnia-specific patient registry whose data is available to researchers, and providing individuals and their families with free educational and other support materials.

 The Hypersomnia Foundation has successfully: 

• Collaborated with representatives from Project Sleep, Wake Up Narcolepsy, Narcolepsy Network, and the Sleep Research Society at the “Sleep Community Capitol Hill Advocacy Day” in Washington, D.C. advocating for increased sleep disorder research at the NIH, VA, and DoD.
• Increased our outreach in the sleep disorder and medical research community by participating in multiple sleep-related conferences, outreach and educational events in the U.S. and Canada.
• Held two Hypersomnia Educational Meetings – one in Seattle and the other in Chicago with over 100 attendees at each event.
• Expanded our education and awareness outreach to include family physicians, medical students and residents, school counselors, and nursing associations.
• Created a downloadable Patient Self-Advocacy brochure.
• Surveyed over 325 individuals about challenges and obstacles they may be experiencing with insurance coverage for IH prescription drugs, providing vital information for our Patient Advocacy Outreach Officer.
• Awarded our first “Research Award” to Dr. Caroline Maness of Emory University for her proposal entitled “Investigating Cytokine Profiles in the Central Disorders of Hypersomnolence.”
• Grown our hypersomnia-focused patient registry at CoRDS (Coordination of Rare Diseases at Sanford) to over 2,000 participants, thereby collecting vital information for researchers.
• Created a series of downloadable Educational Guides for K-12 through College for students with IH and related sleep disorders, as well as their parents and school officials.
• Created a downloadable one-sheet for school counselors and family physicians to quickly recognize potential sleep disorders in students and patients.
• Developed a downloadable Anesthesia Guide for people with IH to share with their medical teams before surgery, and a Patient Care Plan that can be individualized for each person.
• Crafted a downloadable IH-specific Medical Alert Card that both alerts medical personnel that the person has IH and educates the medical personnel as to what IH is and how it can interact with anesthesia and other drugs.
• Continued to share important research and other important news relating to hypersomnia via our monthly newsletter, SomnusNooze, to almost 4,500 subscribers.
• Supported scholarships for five college-bound students with IH through a partnership with Project Sleep.
• Collaborate through monthly meetings with our patient advisory board, comprised of individuals with IH and related disorders (and their supporters), thus helping us stay informed about issues affecting the sleep disorder community.
• Increased our Social Media outreach to over 5,700 active followers, via Facebook, Instagram, Twitter and LinkedIn.
• Committed to support five families with a child with IH to attend a family summer camp specifically for children with sleep disorders through a partnership with Wake Up Narcolepsy.
• Produced monthly educational videos from presentations made by our Medical and Scientific Advisory Boards.
• Expanded our online Healthcare Provider Directory of physicians experienced in the treatment of people with hypersomnias.

All people with hypersomnia deserve full and proper treatment. Optimal diagnosis and treatment derive from better knowledge and increased awareness. Your donations will help us increase awareness of idiopathic hypersomnia through outreach, education and research.

Links:

• Hypersomnia Foundation "SomnusNooze" Monthly Newsletter
• Hypersomnia Foundation Videos and Podcasts
• Hypersomnia Foundation CoRDS International Patient Registry

Project Summary: The Hypersomnia Foundation is committed to increasing awareness of idiopathic hypersomnia (IH) in both the public arena and the medical community through outreach, education, awareness, and research. The Foundation does this, in part, through actively participating in nationwide sleep conferences and educational events, sponsoring a hypersomnia-specific patient registry whose data is available to researchers, and providing individuals and their families with free educational and other support materials.

 The Hypersomnia Foundation has successfully:

Increased our outreach in the sleep disorder and medical research community by participating in multiple sleep-related conferences, outreach and educational events in the U.S. and Canada.

• Held a Hypersomnia Educational Meeting in Seattle for over 100 attendees.
• Expanded our education and awareness outreach to include family physicians, medical students and residents, school counselors, and nursing associations.
• Created a downloadable Patient Self-Advocacy brochure.
• Surveyed over 325 individuals about challenges and obstacles they may be experiencing with insurance coverage for IH prescription drugs, providing vital information for our Patient Advocacy Outreach Officer.
• Awarded our first “Research Award” to Dr. Caroline Maness of Emory University for her proposal entitled “Investigating Cytokine Profiles in the Central Disorders of Hypersomnolence.”
• Grown our hypersomnia-focused patient registry at CoRDS (Coordination of Rare Diseases at Sanford) to over 1,800 participants, thereby collecting vital information for researchers.
• Created a series of downloadable Educational Guides for K-12 through College for students with IH and related sleep disorders, as well as their parents and school officials.
• Created a downloadable one-sheet for school counselors and family physicians to quickly recognize potential sleep disorders in students and patients.
• Developed a downloadable Anesthesia Guide for people with IH to share with their medical teams before surgery, and a Patient Care Plan that can be individualized for each person.
• Crafted a downloadable IH-specific Medical Alert Card that both alerts medical personnel that the person has IH and educates the medical personnel as to what IH is and how it can interact with anesthesia and other drugs.
• Continued to share important research and other important news relating to hypersomnia via our monthly newsletter, SomnusNooze, to almost 4,200 subscribers.
• Supported scholarships for five college-bound students with IH through a partnership with Project Sleep.
• Collaborate through monthly meetings with our patient advisory board, comprised of individuals with IH and related disorders (and their supporters), thus helping us stay informed about issues affecting the sleep disorder community.
• Increased our Social Media outreach to over 5,200 active followers, via Facebook, Instagram, Twitter and LinkedIn.
• Committed to support five families with a child with IH to attend a family summer camp specifically for children with sleep disorders through a partnership with Wake Up Narcolepsy.
• Produced monthly educational videos from presentations made by our Medical and Scientific Advisory Boards.
• Expanded our online Healthcare Provider Directory of physicians experienced in the treatment of people with hypersomnias.

 All people with hypersomnia deserve full and proper treatment. Optimal diagnosis and treatment derive from better knowledge and increased awareness. Your donations will help us increase awareness of idiopathic hypersomnia through outreach, education and research.

Links:

• Hypersomnia Foundation Videos and Podcasts
• Hypersomnia Foundation Conferences and Events
• Research Studies and Clinical Trials

• Seattle Hypersomnia Educational Meeting (PDF)
  
• Sleepy Student HINT Flyer (PDF)
  
• IH Characteristics and Diagnostic Criteria (PDF)
  

Project Summary: The Hypersomnia Foundation is committed to increasing awareness of idiopathic hypersomnia (IH) in both the public arena and the medical community through outreach, education, awareness, and research.  The Foundation does this, in part, through actively participating in nationwide sleep conferences and educational events, sponsoring a hypersomnia-specific patient registry whose data is available to researchers, and providing individuals and their families with free educational and other support materials.

The Hypersomnia Foundation has successfully:

• Increased its outreach in the sleep disorder and medical research community by participating in multiple sleep-related conferences, outreach and educational events in the U.S. and Canada.
• Grown our hypersomnia-focused patient registry at CoRDS (Coordination of Rare Diseases at Sanford) to over 1,700 participants, thereby collecting vital information for researchers.
• Created a series of downloadable Educational Guides for K-12 through College for students with IH and related sleep disorders, as well as their parents and school officials.
• Created a downloadable guide for school counselors to recognize potential sleep disorders in students.
• Developed a downloadable Anesthesia Guide for people with IH to share with their medical teams before surgery, and a Patient Care Plan that can be individualized for each person.
• Crafted a downloadable IH-specific Medical Alert Card that both alerts medical personnel that the person has IH and educates the medical personnel as to what IH is and how it can interact with anesthesia and other drugs.
• Continued to share important research and other important news relating to hypersomnia via our monthly newsletter, SomnusNooze, to almost 3,500 subscribers.
• Supported scholarships for five college-bound students with IH through a partnership with Project Sleep.
• Collaborated with our patient advisory board, comprised of individuals with IH and related disorders (and their supporters), thus helping us stay informed about issues affecting the sleep disorder community.
• Increased our Social Media outreach to over 4,900 active followers, via Facebook, Instagram, Twitter and LinkedIn.
• Committed to support five families with a child with IH to attend a family summer camp specifically for children with sleep disorders through a partnership with Wake Up Narcolepsy. 
• Producing educational videos from presentations made by our Medical and Scientific Advisory Boards 
• Expanded our online Healthcare Provider Directory of physicians experienced in the treatment of people with hypersomnias.

 All people with hypersomnia deserve full and proper treatment. Optimal diagnosis and treatment derive from better knowledge and increased awareness. Your donations will help us increase awareness of idiopathic hypersomnia through outreach, education and research.

Links:

• Hypersomnia Foundation Educational Videos and Podcasts
• Hypersomnia Foundation 2017/2018 Biennial Report
• Hypersomnia Foundation Education Essentials for Students with IH