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 accomplishes this by actively participating in conferences and organizing educational events. Additionally, it sponsors a patient registry specifically for hypersomnia, making its data accessible to researchers. Moreover, the Foundation offers free educational materials and other support tailored to physicians, sleep professionals, individuals affected by hypersomnia, and their families.

The Hypersomnia Foundation (HF) remains dedicated to delivering information, resources, and support to the sleep disorder community via our website, social media channels, email communications, and our SomnusNooze e-newsletter.

Here’s what the Hypersomnia Foundation is doing -

CONFERENCE HIGHLIGHTS

THE HYPERSOMNIA FOUNDATION IS HOSTING #BEYONDSLEEPYSATELLITE - TOGETHER IN ATLANTA

The Hypersomnia Foundation is hosting #BeyondSleepySatellite – Together in Atlanta, a one-day conference on Saturday, October 19, 2024 at the Emory Conference Center Hotel. People can attend in-person or virtually via Zoom.

A meet-and-greet breakfast kicks-off a full day of presentations, panel discussions, breakout sessions, and ample opportunities for Q&A. Lunch and snacks will be provided and the Hypersomnia Foundation will also host a networking dinner closing out the day. This one-day event is for individuals with hypersomnia disorders, as well as their families and supporters. Registration and more details can be found on the Hypersomnia Foundation website. 

THE HYPERSOMNIA FOUNDATION HOSTED ITS ANNUAL #BEYONDSLEEPY CONFERENCE IN HOUSTON, TEXAS 

The Hypersomnia Foundation hosted the 2024 #BeyondSleepy conference in Houston, Texas, from May 31 to June 2. This multi-day gathering was for individuals with idiopathic hypersomnia, narcolepsy, and Kleine-Levin syndrome, as well as their supporters. There were 214 in-person attendees and an additional 577 attended virtually.

An impressive lineup of speakers discussed the latest advancements in research, treatments, and clinical trials at the upcoming #BeyondSleepy conference. Presentations provided attendees with comprehensive and up-to-date information on hypersomnia-related topics fostering a deeper understanding and empowerment within the community. Presentations focused on:

• Breakthroughs in Hypersomnia Research: Insights into recent discoveries and advancements in understanding hypersomnia disorders.
• Innovative Treatment Approaches: Exploring new and effective treatment modalities for idiopathic hypersomnia, narcolepsy, and Kleine-Levin syndrome.
• Patient Perspectives and Advocacy: Sharing experiences and insights from individuals living with hypersomnia disorders, along with strategies for advocacy and support.
• Clinical Trials Update: Providing updates on ongoing and upcoming clinical trials focused on hypersomnia management and treatment.
• Lifestyle Strategies and Coping Mechanisms: Practical tips and advice on managing daily life, including sleep hygiene, stress management, and mental well-being.

Titles of the some of the presentations for the multi-day event were:

• Getting the 'Idiopathic' Out of Idiopathic Hypersomnia (and Narcolepsy type 2) and How Our Community Funds Research
• Navigating a Sleep Disorder as a Young Adult
• What I Wish My Supporters Would Know and How to Communicate My Needs
• Incorporating Patients' Experiences, Perspectives, and Needs in Drug Development: Examples in Narcolepsy and Idiopathic Hypersomnia
• A Novel Investigational Treatment for Hypersomnia: Where We Are and Where We Need To Go
• Spill the Tea: An Open Conversation on Mental Health in Hypersomnia for Supporters/People with IH
• Communication and Advocacy in Healthcare: Being Seen and Heard by Your Doctors

The three-day conference also featured multiple breakout sessions, networking events, and an evening meet-and-greet reception. Videos from the conference are available for viewing on the Hypersomnia Foundation’s YouTube channel.

OUTREACH HIGHLIGHTS

Idiopathic Hypersomnia Day Public Service Announcements - The Hypersomnia Foundation partnered with the film production company PODHEAD STUDIOS to produce an “Idiopathic Hypersomnia Day” (IH Day) narrative mini-documentary and a series of short PSAs to raise awareness on what it’s like to live with IH and other hypersomnia disorders. The mini-documentary, “Hey, Sleepyhead,” debuted at the 2024 #BeyondSleepy Conference in Houston. Videos can be viewed on the Hypersomnia Foundation YouTube Channel.

Idiopathic Hypersomnia Day Celebrations - The Hypersomnia Foundation was excited to celebrate June 1, 2024 as the inaugural IH Day, dedicated to raising awareness and recognition of idiopathic hypersomnia on a global scale. It aims to mobilize the IH community to educate others, raise awareness, and amplify the voices of those living with idiopathic hypersomnia. The goal of IH Day is to accelerate the diagnostic process, advance research to find the cause, and reduce the stigma associated with IH.

The Hypersomnia Foundation partnered with Hypersomnolence Australia to launch their Idiopathic Hypersomnia Awareness Week (IHAW) with IH Day. IHAW began on June 1st with IH Day and concluded on June 7th.

To celebrate the inaugural IH Day, the Hypersomnia Foundation planned a series of outreach and community participation activities:

• Design a T-Shirt: To commemorate the first official IH Day, people were invited to create an image that represented their vision of a brighter day for idiopathic hypersomnia. The winning design was announced at the 2024 #BeyondSleepy conference, and the top four runners-up were also showcased.
• Share Your Reality: The Hypersomnia Foundation received over 100 video submissions from individuals sharing their story and what life is like with IH.
• Share #ThisIsIH: The Foundation created special frames for social media photos. Living with an invisible disorder can be challenging, so the goal for IH Day is to ensure everyone feels seen.
• Proclamations and Resolutions: People were encouraged to connect with their state and local legislators to publicly recognize IH Day, which resulted in the granting of 31 proclamations, spanning over 16 states.
• Spread the Word: A series of graphics were created for people to share across their social media platforms, celebrating IH Day and raising awareness about idiopathic hypersomnia.

Celebrating IH Day and participating in these collaborative actions can help accelerate the diagnostic process, advance research to find the cause, and reduce stigma. #ThisIsIH – The cause may be unknown, but the sleepiness is real.

UNIGHT – Discuss. Share. Connect. - On the last Monday of every month, the Hypersomnia Foundation hosts a FREE virtual get-together for people with sleep disorders, their families, and caregivers. It’s a wonderful opportunity for casual, open dialogue with sleep specialists on topics relevant to the sleep community. Participants can discuss, share, connect, and simply be themselves. More information and registration for these monthly virtual get-togethers are available on our website.

The most recent UNIGHT events have covered the following topics:

• Sleep Health Disparities
• Using Your Voice for Change
• Communication with Your Health Care Provider

Hypersomnia Foundation Continues with YouTube Series "LIVING WITH..." - The Hypersomnia Foundation’s monthly YouTube series, "LIVING WITH...", expands awareness of idiopathic hypersomnia, healthy sleep habits, emerging research in sleep medicine, and more. Hosted by the Hypersomnia Foundation’s CEO, each episode features in-depth conversations with sleep experts, researchers, clinicians, and individuals with IH, focusing on the realities of living with idiopathic hypersomnia. Subscribe to our YouTube channel to stay updated on the latest episodes!

The Hypersomnia Foundation is on TikTok! - Follow us on TikTok to share and connect with others in the sleep disorder community. Discover helpful hints, information, updates, and stories about living with idiopathic hypersomnia. Add us to your social media favorites!

HIGHLIGHTING CONTINUING PROGRAMS AND RESOURCES

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

-- We have expanded our hypersomnia-focused patient registry at CoRDS (Coordination of Rare Diseases at Sanford) to include over 3,800 participants from nearly 30 countries. This creates a vital database for researchers to better understand the symptoms, treatments, and diagnostic journeys 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.” You can find highlights of this publication in the CoRDS Summary Report.

-- 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 maintain our collaboration with the Patient Advisory and Advocacy Council (PAAC), which is composed of individuals with IH and related disorders, along with their supporters. This ongoing partnership helps us stay informed about issues affecting the sleep disorder community and ensures that our efforts are aligned with the needs and perspectives of those we serve.

-- We express our gratitude to our Diversity, Equity, and Inclusion (DEI) Task Force, comprised of volunteers and HF Board members, for their dedicated efforts. They have been instrumental in helping HF gain a deeper understanding of the barriers that many individuals encounter in receiving a correct diagnosis of a sleep disorder. We are committed to working closely with this committee and conducting listening sessions with our community as we strive to integrate DEI principles into all aspects of our work.

-- We continue to produce educational videos derived from presentations delivered by our Medical and Scientific Advisory Boards, as well as experts in fields related to sleep medicine. These videos are made freely accessible through our website and YouTube channel, ensuring widespread access to valuable information for the benefit of our community.

-- We actively expand our Social Media outreach to engage with our 9,748 active followers across platforms such as Facebook, Instagram, Twitter, LinkedIn, and TikTok. Through these channels, we actively disseminate information about ongoing clinical trials, offer access to free resources for the sleep disorder community, promote community support groups, and encourage participation in local and national advocacy initiatives. Our goal is to increase awareness of sleep disorders, advocate for funding for research, and improve access to treatments.

-- We are continuously expanding our online International Healthcare Provider Directory, which lists physicians and sleep specialists with expertise in treating individuals with hypersomnias.

-- We are continuously expanding our education and awareness outreach to various groups, including family physicians, medical students and residents, school counselors, and nursing associations. We provide free materials and resources to help them better understand and support patients and students with sleep disorders. These resources are available on our website and include:

• A series of downloadable Educational Guides tailored for K-12 through college students with IH and related sleep disorders, along with resources for their parents and school officials.
• The “HINT” test, a one-sheet designed for school counselors and family physicians to swiftly recognize potential sleep disorders in students and patients.
• An Anesthesia Guide specifically for individuals with IH to share with their medical teams prior to surgery, accompanied by a customizable Patient Care Plan tailored to each individual's needs.
• An IH-specific Medical ID Card designed to alert medical personnel about the individual's IH and also educate them about what IH is and how it can interact with anesthesia and other medications.
• A Patient Self-Advocacy guide offering tips and strategies on how to effectively advocate for the needs of individuals with rare sleep disorders.
• The Idiopathic Hypersomnia Severity Scale is a questionnaire specifically designed to assess IH symptoms. It serves as a valuable tool for patient identification, follow-up visits, and IH management.

We are immensely grateful for the generosity of those who believe in and support our mission and work. Every individual with hypersomnia deserves comprehensive and appropriate treatment. Improved knowledge and heightened awareness lead to optimal diagnosis and treatment outcomes. Your donations enable us to expand awareness of idiopathic hypersomnia through outreach, education, and research.

Thank you for your support!

Links:

• Top Resources from the Hypersomnia Foundation
• Tips for Supporters
• Sleep Hygiene