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 taking part in conferences and hosting educational events, sponsoring a hypersomnia-specific patient registry whose data is available to researchers, and providing physicians, sleep professionals, individuals and their families with free educational and other sleep disorder-specific support materials.

The Hypersomnia Foundation (HF) continues to provide information, resources, and support to the sleep disorder community through our website, social media, email, and our SomnusNooze e-newsletter.

Recent highlights include:

THE HYPERSOMNIA FOUNDATION WELCOMES TWO KEY LEADERS TO OUR TEAM

The Hypersomnia Foundation recently added a new Chief Executive Officer and a new Chief Operating Officer to our Leadership team.

Our new Chief Executive Officer is a well-respected sleep advocacy leader who focuses on accelerating outcomes for the sleep health community. Her experiences that will benefit HF moving forward include:

• Strategic patient and family advocate for people with sleep disorders
• Leading KOL, author of “Waking Mathilda”, and host of the “Narcolepsy 360” podcast
• Caregiver to a teen with T1 Narcolepsy
• CXO of Sleep Consortium

“I am honored and excited to lead the Hypersomnia Foundation at such a critical time of growth for the organization within the wider patient advocacy and sleep research space,” says HF’s new CEO.

“As interest in hypersomnias grow, now is the time to add an energetic leader who understands our community. Our new CEO has the vision to grow our advocacy and support efforts at the Hypersomnia Foundation, allowing us to reach more people and increase the quality of life for those with central disorders of hypersomnolence,” says the Chair of HF’s Board of Directors and former HF CEO.

Our new Chief Operating Officer is also sharing her expertise as a long-standing sleep advocate with the Hypersomnia Foundation. Additionally, her experiences that will benefit HF moving forward include:

• Executive Operations Experience
• Leadership in Sleep and Education Research
• Caregiver to a son with T1 Narcolepsy
• CEO of Sleep Consortium
• Program Coordinator for the World Sleep Society

“I am delighted to join the Hypersomnia Foundation and bring my passion and skills to improving the lives of all those with sleep disorders,” says HF’s new COO.

"We are elated to find a COO with the leadership and operational acumen. The Hypersomnia Foundation looks forward to accelerating our mission with her exceptional background and knowledge of hypersomnias", says the Chair of HF’s Board of Directors.
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Learn more about our new CEO and new COO and the rest of the HF Leadership team on our website.

HYPERSOMNIA FOUNDATION WELCOMES NEW MEMBER TO OUR MEDICAL ADVISORY BOARD

The newest member of the Hypersomnia Foundation’s Medical Advisory Board is a board-certified and fellowship-trained pediatric neurologist. She currently serves as the Director of Child Neurology and Pediatric Sleep Medicine at Geisinger, Janet Weis Children's Hospital. Her clinical interests include sleep-wake disorders in neurologic disease, narcolepsy, hypersomnia disorders, and neuroimmunology. Her research interests include sleep-wake disorders in neurologic disease, hypersomnia disorders, and sleep-wake disorder phenotyping. 

Learn more about the distinguished members of our Medical and Scientific Advisory Boards on our website.

HF’S CHAIR OF OUR BOARD OF DIRECTORS TO SPEAK AT SASM CONFERENCE

Chair of the Hypersomnia Foundation’s Board of Directors was selected to be a speaker at the 12th Annual Meeting of the Society of Anesthesia and Sleep Medicine (SASM). For this year’s event, “Sleep Health Research and Innovation: A Patient-Centered Direction,” SASM has brought together an excellent team of healthcare providers and sleep experts to speak on the latest discoveries in sleep health research and innovations to improve the patient experience. Congratulations to our Board Chair for being selected as a speaker at SASM’s annual meeting and for his willingness to share his experience and expertise.

SAVE THE DATE FOR HF’s 2023 #BEYONDSLEEPY CONFERENCE!

The Hypersomnia Foundation is planning our 2023 #BeyondSleepy Conference for people with idiopathic hypersomnia, narcolepsy, and Kleine-Levin Syndrome and their supporters. Our hybrid event will be taking in Indianapolis, Indiana from June 2 - 4, 2023. Details will be updated on the “Events” section of our website.

HARMONY BIOSCIENCES AWARDS THE HYPERSOMNIA FOUNDATION WITH A 2022 “PATIENTS AT THE HEART” GRANT

We are extremely grateful for Harmony Biosciences recognition of our work through our #UNITE Beyond Sleepy – An Interactive Forum for Peer-to-Peer Relational Connections program by selecting the Hypersomnia Foundation as a recipient of their 2022 “Patients at the Heart” program.

We established the #UNITE program to foster peer-to-peer support for individuals with hypersomnia disorders to establish meaningful connections and empowerment as they navigate the isolation that often comes with living with an invisible illness.

The Harmony Biosciences' "Patients at the Heart" program underscores their ongoing commitment to support the comprehensive needs of people affected by rare neurological diseases. On September 22, World Narcolepsy Day, Harmony Biosciences announced their 2022 grant recipients. The Hypersomnia Foundation was one of five nonprofit organizations selected for their work to support and address the challenges of people living with sleep disorders and rare neurological diseases who experience excessive daytime sleepiness.

THANK YOU, Harmony Biosciences, for believing in our mission and supporting our work with your generous 2022 "Patients at the Heart" grant award.

Read more about the Harmony Biosciences "Patients at the Heart" and "Progress at the Heart" award programs and the 2022 grant recipients.

HF AND THE AASM FOUNDATION PARTNER TO PROVIDE RESEARCH FUNDING

As leaders in the sleep medicine field, the AASM Foundation and the Hypersomnia Foundation partnered to provide funding to the Strategic Research Grant program, in support of novel hypersomnolence research.

The Strategic Research Grant program supports high-impact, investigator-initiated research projects aimed at providing optimal, cost-effective diagnoses and care for people with sleep disorders. The project chosen to be co-funded by the AASM Foundation and the Hypersomnia Foundation was submitted for a request for applications (RFA) focused on topics that align with both the strategic goals of the AASM and with the research priorities of the Hypersomnia Foundation.

“The AASM Foundation is excited about our collaboration with the Hypersomnia Foundation, which represents our inaugural grant funding collaboration with a patient advocacy organization. This grant funding collaboration is a meaningful step towards our vision for all individuals and communities to achieve healthier lives through better sleep,” said AASM Foundation President.

The 2022 AASM Foundation Strategic Research Grant recipient was awarded to the research project “A Novel Protocol for Understanding and Diagnosing Idiopathic Hypersomnia,” which recognizes that the current and most common methodology of diagnosing IH, a polysomnogram (PSG) and multiple sleep latency test (MSLT), may have poor sensitivity, specificity, and reliability. This research aims to help address the need to identify an accurate and reliable diagnostic tool for IH.

“Clinicians and patients have long been aware of the shortcomings of current sleep study protocols for diagnosing hypersomnias,” said Hypersomnia Foundation Board Chair. “This research on extended sleep study testing in the home environment will test out protocols for capturing a more accurate picture of a patient’s sleep experience over longer periods of time. Someday, this research may lead to increased accuracy in diagnosis and a greater understanding of the variation of sleep patterns across the hypersomnia spectrum.”

Together, the AASM Foundation and Hypersomnia Foundation can positively impact more lives by funding high-impact research, especially for those diagnosed with idiopathic hypersomnia.

For detailed information about the research award recipient, visit the AASM Foundation website.

NEWLY RELEASED “BONUS CONTENT” VIDEOS FROM THE HYPERSOMNIA FOUNDATION’S 2022 #BEYONDSLEEPY CONFERENCE

HF recently released two “bonus content” videos from our 2022 #BeyondSleepy Conference held this past June in Charlotte, NC.

“A Conversation with Avadel Pharmaceuticals” - Hypersomnia Foundation's Industry Outreach Officer speaks with the Vice President of Medical and Clinical Affairs for Avadel Pharmaceuticals. They discuss Avadel’s history of focusing drug delivery to historically unmet medical needs, their creation of “plain language summaries” so study and clinical trial details can reach a broader audience, and the importance of always listening to patients, and recognizing clinical trial participants as “medical heroes.” 

“A Conversation with Jazz Pharmaceuticals” - Hypersomnia Foundation's Industry Outreach Officer speaks with Chief Medical Officer for Jazz Pharmaceuticals. They discuss the importance of understanding and meeting patients’ needs, Jazz Pharma’s emphasis on getting medications to the public as soon as possible, and Jazz’s dedication to partnering with patient advocacy organizations.   

HF SIGNS SUPPORT LETTER FOR THE ACCELERATING KIDS’ ACCESS TO CARE ACT

The Hypersomnia Foundation was pleased to be one of the 110 organizations to write in support of the Accelerating Kids’ Access to Care Act (H.R. 3089/S. 1544) which would improve the ability of children with rare diseases to access time-sensitive treatment by reducing unnecessary barriers to care across state lines. The sign-on letter urged U.S. Congress committee chairs to proceed with legislative hearings and to include this important legislation as part of any year-end package. More details can be found on the NORD website.

Over the past months, we have continued the following: 

-- We have grown our hypersomnia-focused patient registry at CoRDS (Coordination of Rare Diseases at Sanford) to over 3,800 participants (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. According to a publication from the Agency for Healthcare Research and Quality Research, “Patient-powered registries and patient-powered research networks offer new directions for patient-centered outcomes research and contribute to translational science in important ways. Experts agree that these registries are transforming patient/caregiver support and advocacy groups into research organizations. They also provide patients and family members another way to become engaged in research beyond the role of advisor or informant to researcher-generated studies.” 

-- We continue to share important research and other news relating to rare sleep disorders via our free e-newsletter, SomnusNooze, to almost 5,000 subscribers. 

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

- We thank our Diversity, Equity and Inclusion (DEI) Task Force, a group of volunteers and HF Board members, who have been working to help HF better understand the barriers that many people face in getting a correct diagnosis of a sleep disorder. We continue to work diligently with this committee and holding listening sessions with our community as we work to incorporate DEI principles into everything we do.

-- 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 increase our Social Media outreach to 9,437 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 continue to expand our online Healthcare Provider Directory of physicians experienced in the treatment of people with hypersomnias.

-- 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 ID 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.
• The Idiopathic Hypersomnia Severity Scale - a questionnaire designed specifically to measure IH symptoms and serve as a useful tool for patient identification, follow-up visits, and IH management. 

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

Links:

• Tips for Supporters
• Hypersomnia Foundation Registry at CoRDS Summary Report
• Sleep Hygiene

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 taking part in conferences and hosting educational events, sponsoring a hypersomnia-specific patient registry whose data is available to researchers, and providing physicians, sleep professionals, individuals and their families with free educational and other sleep disorder-specific support materials.

The Hypersomnia Foundation (HF) continues to provide information, resources, and support to the sleep disorder community through our website, social media, email, and our SomnusNooze e-newsletter.

Recent highlights include:

BEYOND SLEEPY 2022 HYPERSOMNIA FOUNDATION CONFERENCE

In early June, the Hypersomnia Foundation hosted a three-day conference in Charlotte, North Carolina connecting people with hypersomnias with researchers and patient advocates. Over 140 people attended our “Beyond Sleepy 2022” conference in-person and were joined by 450 virtual attendees.

Internationally known sleep medicine researchers presented on multiple topics related to sleep medicine and sleep disorders, including discussions on idiopathic hypersomnia treatments, current and future research, insight into sleep disorder diagnoses, new approaches to the classification of hypersomnias, cognitive-behavioral therapy for coping with idiopathic hypersomnia, and pediatric disorders of hypersomnolence.

Leading patient advocates moderated group discussions and interactive break-out sessions, which included discussions on what to expect as a participant in a clinical trial, working through insurance and disability barriers, accessing and affording prescription medications, how to plan for emergencies and hospitalizations, and active discussions surrounding diversity, equity and inclusion in health care. Break-out sessions were also held for families and caregivers of people with hypersomnias. Recordings of select conference sessions will be available on our website.

WORLD SLEEP 2022 and AASM SLEEP 2022 CONFERENCES

As part of our mission to raise awareness and advocate for more research and better treatments, we were sponsored exhibitors at the World Sleep 2022 Conference in Rome and at the American Academy of Sleep Medicine (AASM) SLEEP 2022 conference in North Carolina. We thank our Board members and volunteers for travelling to these conferences, working our exhibit booths, and sharing information about the Hypersomnia Foundation and our mission.

HF CO-SPONSORS CME/CE EDUCATION SYMPOSIUM

Working in partnership with Haymarket Medical Education, we were pleased to sponsor a complimentary accredited continuing education dinner symposium at the AASM SLEEP 2022 conference. The symposium, entitled “A New Dawn for Better Outcomes in Patients With Idiopathic Hypersomnia: New Data, New Guidance, New Treatments,” was an evidence-based panel discussion for sleep specialists, psychiatrists, neurologists, and advanced-practice clinicians.

HF RECEIVES “2022 SLEEP CHAMPION” AWARD

The Hypersomnia Foundation was honored to receive the American Academy of Sleep Medicine Foundation’s 2022 Sleep Champion Award in recognition of our educational outreach and mission-driven work for the sleep community. HF’s Board of Director's Chair accepted the award at a reception and ceremony held during the AASM SLEEP 2022 conference.

HELPFUL ONLINE RESOURCE LIST

On our website, we recently compiled a quick one-page reference list of the top resources for patients, healthcare providers, and researchers. Free to download, these can easily be shared with physicians, family members, and anyone needing further information about idiopathic hypersomnia and related sleep disorders.

WEBPAGE UPDATE

The Hypersomnia Foundation’s Medical Advisory Board updated our “Hormonal Therapy, Birth Control & Menstruation: Considerations for People with Hypersomnias” webpage to include testosterone treatment. Our goal with this update is to be able to provide individuals and their doctors with information to help make informed choices about birth control and hormonal therapy.

Over the past months, we have continued providing the following:

-- We have grown our hypersomnia-focused patient registry at CoRDS (Coordination of Rare Diseases at Sanford) to over 3,800 participants (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. According to a publication from the Agency for Healthcare Research and Quality Research, “Patient-powered registries and patient-powered research networks offer new directions for patient-centered outcomes research and contribute to translational science in important ways. Experts agree that these registries are transforming patient/caregiver support and advocacy groups into research organizations. They also provide patients and family members another way to become engaged in research beyond the role of advisor or informant to researcher-generated studies.”

-- We continue to share important research and other news relating to sleep disorders via our free e-newsletter, SomnusNooze, to almost 5,000 subscribers.

-- We continue to collaborate with our Patient Advisory and Advocacy Council (PAAC), comprised of individuals with IH and related disorders (and their supporters), helping us stay informed about issues affecting the sleep disorder community.

-- We thank our Diversity, Equity and Inclusion (DEI) Task Force, a group of volunteers and HF Board members, who have been working to help HF better understand the barriers that many people face in getting a correct diagnosis of a sleep disorder. We continue to work diligently with this committee and holding listening sessions with our community as we work to incorporate DEI principles into everything we do.

-- We continue to produce educational videos from presentations made by our Medical and Scientific Advisory Boards, conference presenters, 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 International Healthcare Provider Directory of physicians experienced in the treatment of people with hypersomnias.

-- We continue to increase our Social Media outreach to 9,437 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 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 ID 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.
• The Idiopathic Hypersomnia Severity Scale - a questionnaire designed specifically to measure IH symptoms and serve as a useful tool for patient identification, follow-up visits, and IH management.

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

IMAGES FROM OUR BEYOND SLEEPY 2022 CONFERENCE BELOW: