Hypersomnia Foundation

Often, our sleepiness eliminates the joy of cooking. It's more a matter of what's easiest to make rather than what nutrients will support and fuel my body. ⁠ Haley (@thesleepy_ot) shares — Does the thought of cutting up fresh produce- standing for long periods of time just to turn around and have to spend more time cooking the meal- feeling completely unachievable? ⁠ This vegetable chopper has CHANGED THE GAME!!! Instead of spending 25 minutes chopping with a knife (that’s extremely dull most of the time in our house🙃), this task now takes roughly 5-10 minutes. I store them in an airtight container to have ready whenever I want them throughout the week when cooking and freeze the remainder of what doesn’t fit to have ready for the coming weeks. I enjoy cooking- eating what’s good for my body. It’s the actual act of cooking that IH has made tough. ⁠ Do you have a kitchen tool that helps you speed up your process of cooking? Let us know in the comments below 👇️

At #BeyondSleepy, those who attended in person received the official 2024 IH Day T-shirt. ⁠ ⁠ We wanted to give YOU the opportunity to have your own as well! So, we've set up a merch shop that allows us to create fundraising campaigns through selling merchandise. Our shop features our top 5 T-shirt designs from this year’s IH Day T-shirt Design Contest. 🎉⁠ ⁠ Check out our merch by clicking here -https://tr.ee/5WX_fLtySZ ⁠ All proceeds will go towards the Hypersomnia Foundation.

Join Project Sleep in beautiful Atlanta, GA for the Hypersomnia Foundation's #BeyondSleepySatetllite 2024 One-day Conference for people with idiopathic hypersomnia, narcolepsy, and Kleine-Levin syndrome and their supporters. They will have a wonderful mix of speakers covering the latest in research, treatments, and clinical trials; networking and discussion sessions; meals; and more. Come catch up with old friends and meet new ones.⁠ ⁠ The conference is in Atlanta, Georgia, on Saturday, October 19, 2024, from 10:00 a.m. to 4:00 p.m. (ET) at the Emory Conference Center Hotel.⁠ The day kicks off with breakfast at 9:00 a.m., with presentations beginning at 10:00 a.m. Lunch and snacks will be provided during a day of breakout sessions, ample Q&A, and a panel discussion. Dinner will be provided at the conclusion of the day. ⁠ Registration for in-person attendance is $20 per person. Coming with your family? Each additional family member is $5 per person.⁠ Thanks to generous support from Hypersomnia Foundation’s sponsors, virtual registration is free.⁠ Click here to register - https://lnkd.in/eD3QxeUf ⁠ For those traveling to Atlanta, there is a room reservation block at the Emory Conference Center Hotel.⁠ Reserve a room here - https://lnkd.in/gZkuq86z ⁠ We look forward to seeing you in-person and/or virtually in Atlanta on October 19, 2024!⁠ Together we will get #BeyondSleepy in Atlanta!⁠

Join the Hypersomnia Foundation at the #BeyondSleepySatetllite 2024 One-day Conference for people with idiopathic hypersomnia, narcolepsy, and Kleine-Levin syndrome and their supporters. There will be a wonderful mix of speakers covering the latest in research, treatments, and clinical trials; networking and discussion sessions; meals; and more. ⁠ The conference is in Atlanta, Georgia, on Saturday, October 19, 2024, from 10:00 a.m. to 4:00 p.m. (ET) at the Emory Conference Center Hotel.⁠ Click here to register - https://lnkd.in/gEvf4Mqs

We need your voice! We are conducting a survey to understand the challenges faced by patients with Narcolepsy. Your insights on diagnosis, treatment satisfaction, and shared decision-making are invaluable. As a thank you, you’ll receive a $20 e-gift card for completing the survey. Help us make a difference in the lives of those affected by Narcolepsy by sharing your experiences. Take the survey now and contribute to a brighter future! https://lnkd.in/e_kYBF8r #Narcolepsy #PatientVoice #HealthcareResearch #PatientExperience #NarcolepsyAwareness

What is your reality with idiopathic hypersomnia? The bad? The good? Dr. Anne Marie Morse presented #ThisIsIH: Day-to-Day Living with IH at #BeyondSleepy in Houston. It's so great to interact with doctors who understand the social and emotional impact of IH. You can interact with doctors like Dr. Anne Marie Morse at our upcoming #BeyondSleepySatellite in Atlanta, Georgia. Join us in beautiful Atlanta, Georgia for the Hypersomnia Foundation's #BeyondSleepySatellite one-day hybrid conference for people with idiopathic hypersomnia, narcolepsy, and Kleine-Levin syndrome and their supporters.⁠ ⁠ The conference is in Atlanta, Georgia on Saturday, October 19, 2024, from 10:00 a.m. to 4:00 p.m. (ET) at the Emory Conference Center Hotel.⁠ ⁠ The day kicks-off with breakfast at 9:00 a.m. with presentations beginning at 10:00 a.m. Lunch and snacks will be provided during a day of breakout sessions, ample Q&A, and a panel discussion. Dinner will be provided at the conclusion of the day.⁠ ⁠ REGISTER HERE - https://lnkd.in/eD3QxeUf ⁠ Registration for #BeyondSleepySatellite: Together in Atlanta is $20 per person. Coming with your family? Each additional family member is $5 per person.⁠ For those traveling to Atlanta, we have secured a room reservation block at the Emory Conference Center Hotel.⁠ PS. You can watch her full #BeyondSleepy in Houston presentation on YouTube. #ThisIsIH #forthesleepyones #hypersomniaawareness #idiopathichypersomnia #sleepdisorder #FakeAwake

On August 22nd, Alkermes announced the initiation of the Vibrance-2 study, a phase 2 clinical trial evaluating the safety and efficacy of ALKS 2680 compared to placebo in adults with narcolepsy type 2 (NT2). "We are pleased to initiate Vibrance-2, a phase 2 clinical study for adults with narcolepsy type 2, based on the data from our phase 1, proof-of-concept study in this patient population. ALKS 2680 is the most advanced investigational orexin 2 receptor agonist currently in development for narcolepsy type 2," said Craig Hopkinson, M.D., Chief Medical Officer and Executive Vice President, Research & Development at Alkermes. "Across narcolepsy type 1 and narcolepsy type 2, significant unmet need remains, and we look forward to further characterizing the efficacy and safety profile of ALKS 2680 in the Vibrance studies in both of these important patient populations." Read the full article at: https://lnkd.in/eCZBfH_x #narcolepsy #sleepdisorder #phase2 #clinicaltrial #Alkermes

Welcome to Living With… a YouTube series presented by the Hypersomnia Foundation. In this special episode, Claire Wylds-Wright, CEO of the Hypersomnia Foundation, sits down with her Co-Founder of Sleep Consortium, Lindsay Jesteadt, and Karmen Trzupek of Global Genes. In this episode, Karmen, Lindsay, and Claire describe the partnership between Sleep Consortium and Global Genes. They explain how, through Rare-X, a research program of Global Genes, Sleep Consortium, Inc. Consortium is working to revolutionize research, speed up diagnosis, create better treatment plans, and enhance understanding of Central Disorders of Hypersomnolence. Karmen Trzupek is the Senior Director of Scientific Programs at Global Genes. In this role, she is responsible for developing collaborative programs and partnerships that maximize the RARE-X data platform to advance rare disease understanding and support industry-supported therapeutic studies. By background and training, Karmen is a clinical genetic counselor. She received her graduate degree from Northwestern University and has worked in both academia and telemedicine. In her last role, she directed clinical trial services at InformedDNA, providing patient support, genetic testing, and clinical trial screening for patients impacted by rare disorders. To learn more about Sleep Consortium, Inc. Consortium’s groundbreaking data collection platform and to participate, visit sleepconsortium.org. Be sure to follow them on Instagram @sleep_consortium and LinkedIn @sleep-consortium-inc. To learn more about Global Genes and their work to empower individuals and communities affected by rare diseases, go to globalgenes.org. Be sure to follow them on Instagram @globalgenes and LinkedIn @global-genes-rare-project. Click here to watch full episode - https://lnkd.in/eStaWaEf

We are excited to share with you a plain language summary for the clinical trial for low sodium oxybate! ✨️ Click here to check it out - https://tr.ee/k4urQkMQ2U #ThisIsIH #forthesleepyones #hypersomniaawareness #idiopathichypersomnia #sleepdisorder #FakeAwake

The cause may be unknown, but the sleepiness is real. #ThisIsIH Idiopathic hypersomnia (IH) is a long-lasting (chronic) sleep disorder of the brain (neurologic disorder). Idiopathic means doctors don’t know what causes it. People who have IH may spend most of their day either sleeping or thinking about, craving, or even fighting the urge to sleep, which can severely impact their quality of life.