Hypersomnia Foundation

We all have a rough night every now and then, but if you often have trouble sleeping more than 3 times a week, that could be a sign of a sleep disorder. Sleep disorders are linked to a higher risk of heart disease and stroke. Talk to your doctor about your sleep habits and your heart health.

We took big steps into our future era by hosting Idiopathic Hypersomnia Day (IH Day). IH Day is devoted to informing and acknowledging idiopathic hypersomnia on a global scale. IH Day mobilizes the IH community to raise awareness, educate, and uplift the voices of those living with idiopathic hypersomnia. IH Day collaborated with Idiopathic Hypersomnia Awareness Week (IHAW) led by Hypersomnolence Australia. Here are the results of our first IH Day: ⁠ 🔹 The announcement of a new mini-documentary⁠ 🔸 The debut of a new PSA video⁠ 🔹 A community created t-shirt for IH day (and 4 community runner ups!)⁠ 🔸 New sharable infographics⁠ 🔹 New collaborative efforts with other organizations like Hypersomnolence Australia @hypersomnolence_australia (a special thank you to Michelle Chadwick for this and for the great content she put together)⁠ 🔸 Over 100 community submissions sharing their story and what life is like with IH⁠ 🔹 31 proclamations spanning a third of US States⁠ Thank you to everyone in the community who helped make this happen! ⁠ ⁠We're excited to announce next year's IH Day is June 7, 2025. Stay tuned for ways you can participate and spread awareness about idiopathic hypersomnia. Help us make our future a reality as we enter into a New Era for Hypersomnia Foundation. From now until the end of the year, we have a groundbreaking goal of raising $75,000.⁠ ⁠ Ways that you can support Hypersomnia Foundation:⁠ - Donate ⁠ - Become a fundraiser⁠ - Spread the word about our fundraising goals with your community on social media, email outreach and more.⁠ ⁠ No amount is too small. We’re grateful for every dollar! So join us as we celebrate a decade of Hypersomnia Foundation's impact. We're just getting started. ⁠ ⁠ Click the link to donate or learn how to be a fundraiser - https://lnkd.in/eeFs4THa

📢 Calling ALL Sleep Community 📢 We need your help! We are on a mission to have more treatment options available for people with idiopathic hypersomnia, medications that will improve their quality of life. Well, we have an opportunity to encourage the FDA to review a new medication for PWIH. ✍️ Sign our petition on Change.org and share it with your community 💙 We urge the FDA to consider the significant unmet need for a non-scheduled drug with a unique safety profile and a simple dosing regimen in IH. We believe that the sNDA for pitolisant should be filed, designated for Priority Review, and reviewed in its entirety. We, as a community, have reviewed the benefit-risk of pitolisant and believe that it should be available as an option for people with IH and their doctors as soon as possible. Right now, people with idiopathic hypersomnia only have 1 FDA-approved medication. We need more! Your signature and your voice have the power to improve the quality of life for others! Click here to sign the petition - https://chng.it/vFwDQGz626 #ThisIsIH #forthesleepyones #hypersomniaawareness #idiopathichypersomnia #sleepdisorder #FakeAwake #hypersomniafoundation

At #BeyondSleepySatellite in Atlanta, we asked community members... What do you want for the future? Here are their responses. An essential part of our work has been connecting with you, and we are grateful you are part of our community.⁠ We have been listening to community members. We don't plan on stopping. Our vision for the future is to support our community in fulfilling these desires. Quicker diagnosis Understand the cause of IH Effective medications Better quality of life More awareness and understanding and more... Help us make our future a reality as we enter into a New Era for Hypersomnia Foundation. From now until the end of the year, we have a groundbreaking goal of raising $75,000.⁠ ⁠ Ways that you can support Hypersomnia Foundation:⁠ - Donate ⁠ - Become a fundraiser⁠ - Spread the word about our fundraising goals with your community on social media, email outreach and more.⁠ ⁠ No amount is too small. We’re grateful for every dollar! So join us as we celebrate a decade of Hypersomnia Foundation's impact. We're just getting started. ⁠ ⁠ Click the link to donate or learn how to be a fundraiser - https://lnkd.in/eeFs4THa

At #BeyondSleepy, we asked community members how it felt to watch a mini-documentary about living with idiopathic hypersomnia. Here is Beth's reaction, who just so happens to be the subject in 'Caught in This Riptide.' Watch doc here - https://lnkd.in/g7p2-smR What is your reaction to 'Caught in This Riptide'? Let us know in the comments below 👇️

⭐️Hypersomnia Foundation presents ⭐️ Caught In This Riptide - a mini-documentary about living with idiopathic hypersomnia. Beth Boyce lives with idiopathic hypersonia, a rare, debilitating sleep disorder that’s broadly misunderstood. In Hood River, Oregon, where Beth gets by, it can often feel like both an accommodating sanctuary and a pit of fog she can’t escape. Click here to watch - https://lnkd.in/g7p2-smR Feel free to share your thoughts about the documentary in the comments below. Special thanks to Beth, who generously allowed us to capture her reality of living with idiopathic hypersomnia. #ThisIsIH #forthesleepyones #hypersomniaawareness #idiopathichypersomnia #sleepdisorder #FakeAwake

At #BeyondSleepy, we asked community members how it felt to watch a mini-documentary about living with idiopathic hypersomnia. Here's what Sophie had to say. Watch doc here - https://lnkd.in/g7p2-smR What is your reaction to 'Caught in This Riptide'? Let us know in the comments below 👇️ #ThisIsIH #forthesleepyones #hypersomniaawareness #idiopathichypersomnia #sleepdisorder #FakeAwake

This year, the Hypersomnia Foundation set out to raise critical awareness for people with idiopathic hypersomnia (IH) in new and creative ways. Caught In This Riptide is a mini-documentary following Beth, a person living with idiopathic hypersomnia and a community member. It's an intimate portrayal of the day-to-day realities of IH and how community is key in managing symptoms. Watch mini-documentary here - https://lnkd.in/g7p2-smR Producing this film ignited a new passion for visual storytelling. We don't just want IH to be understood by our sleepy community. We want our society and global communities to understand and support efforts to raise awareness. This part of our new era -- the future of the Hypersomnia Foundation brings meaningful and real stories to share about idiopathic hypersomnia. We are on our final push for the Giving Tuesday initiative. With every dollar donated, a generous donor will add $3; your contribution is quadrupled up to $60,000 through December 15, 2024.⁠ ⁠ $1 = $4!⁠ ⁠ When we say every dollar counts, we truly mean it!⁠ ⁠ Donate here - https://lnkd.in/eeFs4THa

🚨 REGISTRATION IS OPEN 🚨 We are very excited to announce Support4Supporters's registration is now open! 🤝 ⁠ ⁠ Starting January 8th, 2025, 7 pm EST/ 4 pm PST, we will have a new UNIGHT support group for supporters. ⁠ ⁠ This group will meet on the second Wednesday of each month via Zoom and will be led by the amazing Christine Ingrassia!⁠ ⁠ Register here - https://lnkd.in/eXj_ANXB ⁠

How are you feeling about the holidays? Will you have to navigate gatherings with family and friends who don't understand you sleep disorder? This Monday, Matthew Horsnell will lead a discussion around "Support for the holidays."⁠ ⁠ Join us on Monday, December 16th via Zoom at 7:00 PM (Eastern) / 4:00 PM (Pacific).⁠ ⁠ UNIGHT is a free virtual get-together for people with sleep disorders, family, and friends.⁠ Register here - https://lnkd.in/eJnkFsiz ⁠ Let’s get #BeyondSleepy!⁠ ⁠ UNIGHT is not a focus group and is not part of a research study and there is no compensation for attending.