Hypersomnia Foundation

Hypersomnia Foundation

Non-profit Organizations

Atlanta, GA - Georgia 1,354 followers

A nonprofit advocating for research and raising awareness of idiopathic hypersomnia and related sleep disorders.

About us

Our Mission The Hypersomnia Foundation engages, informs and champions our global community to improve the lives of people with idiopathic hypersomnia and related sleep disorders. #hypersomnia #Beyondsleepy #narcolepsy #KLS Our Values PASSION: We give voice to the significant unmet needs of the hypersomnia community, continuously striving to realize our dream of a cure. VALIDATION: We understand what it is like to live with an invisible disease. When you share your story, we believe you. INCLUSIVENESS: We believe all people with hypersomnias deserve timely diagnosis and effective treatment in order to live a healthier, more fulfilling life. PARTNERING: We strive to connect our patient community to multiple stakeholders who are critical to improving the lives of people with central hypersomnias. Clinicians, researchers, pharmaceutical companies, educators, regulators and legislators benefit from strong ties to each other and the patient community. TRUST: We are a trusted source of medical information for people with hypersomnia, their physicians and the general public. Your donations and shared medical information are fully protected and used only in accordance with your wishes. DEDICATION: Our team of volunteers and employees devote their time and professional skills—with unwavering focus—to the best interests of the hypersomnia community.

Website
http://www.hypersomniafoundation.org
Industry
Non-profit Organizations
Company size
2-10 employees
Headquarters
Atlanta, GA - Georgia
Type
Nonprofit
Founded
2014
Specialties
Idiopathic hypersomnia, Related disorders (narcolepsy; KLS; other hypersomnias), User-friendly website with numerous resources, Advocacy, Hypersomnia Research Award Program, 501(c)(3) non-profit, Patient Registry of 1200+, Healthcare Provider Directory (see website to join or to access), Conferences gathering top researchers, Education Guides for students, Disability Resources, Prestigious Medical/Scientific Advisory Boards, Vetted medical and research updates, E-newsletter, Patient stories, and Narcolepsy

Locations

  • Primary

    4514 Chamblee Dunwoody Road

    #229

    Atlanta, GA - Georgia 30338, US

    Get directions

Employees at Hypersomnia Foundation

Updates

  • View organization page for Hypersomnia Foundation, graphic

    1,354 followers

    We are delighted to have partnered with Project Sleep on the Jack & Julie Scholarship again this year. FIVE students of the 37 recipients have IH. @HypersomniaFoundation was able to fund their scholarships. Join us in congratulating Trinity. 🎓 Trinity, Watertown, WI: Trinity started having symptoms of idiopathic hypersomnia at the end of her sophomore year, and was diagnosed in January of her junior year. She attended a project-based charter school, where she was involved with National Honor Society, received high honors, started an eSports team and a banner printing business, and participated in many clubs and volunteer opportunities. Trinity will attend Carroll University to double major in animal behavior and business administration. To learn more about all the Jack & Julie Narcolepsy Scholarship recipients, go to: https://lnkd.in/eSF4u3AW

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    1,354 followers

    This past June, nearly 800 individuals attended #BeyondSleepy Houston in person and virtually. Now YOU can access all the presentations from the #BeyondSleepy Conference main room and break out room!⁠ They are now available on our YouTube channel. Be sure to check out these presentations and subscribe as we continue to share informative videos with our community! https://lnkd.in/gzw-GNxB #ThisIsIH #forthesleepyones #hypersomniaawareness #idiopathichypersomnia #sleepdisorder #FakeAwake

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    1,354 followers

    Summer has been summering. It always reminds us how helpful a routine is for managing IH symptoms. It also reminds us when we do activities outside of the routine it can have a greater effect on our sleepiness. As Haley (@thesleepy_ot) says — When it comes to trying to do something outside of those routines, which could be absolutely anything from weekly grocery shopping on a weekend, going out to socialize with friends or family- really anything- it can completely wipe me out for the following days on end. It may be fun, it also sometimes is absolutely worth it for me personally because in a situation such as socializing- it’s something extremely meaningful in my life. Will it mean I’ll “go to bed for a couple days”? Most likely. But on those days I will take it easy and give myself grace. As I’ve noted in other videos- bringing a little humor into educating others and advocating for more awareness is NOT intended to be taken that IH is a joke. IH is very real. It’s extremely challenging to navigate. We may not understand what causes this, “but our sleepiness is real”. Every symptom that comes along with IH is REAL!!

  • View organization page for Hypersomnia Foundation, graphic

    1,354 followers

    Do you ever wish sharing your story would create change in treatments, relationships, symptom management, and more? Do you have uneasiness about sharing your reality? ⁠ Join us Monday, July 29th via Zoom at 7:00 PM (Eastern) / 4:00 PM (Pacific) for a discussion with Josh Andrews on “Using Your Voice For Change.”⁠ ⁠ ⁠ UNIGHT is a free virtual get-together for people with sleep disorders, family, and friends.⁠ ⁠ Josh Andrews became NFL Superbowl Champion while playing for the Philadelphia Eagles as an offensive lineman in 2017. Josh started playing football at a young age. After high school, he went on to play college football at Oregon State University. After college, his athletic talents landed him positions on NFL teams including the Minnesota Vikings, Indianapolis Colts, New York Jets, Atlanta Falcons, and New Orleans Saints. Josh and his lovely wife Amber have 3 children and Josh is also a person living with narcolepsy. ⁠ Click here to register- https://lnkd.in/eaJVZcuY 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.⁠

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  • View organization page for Hypersomnia Foundation, graphic

    1,354 followers

    Project Sleep cordially invites you to attend - Awakening America: A Congressional Briefing on Sleep and Public Health On Tuesday, July 16th, 2024 at 12:00 noon ET, please join the sleep community for a briefing on recent advancements and emerging opportunities to improve sleep via public health. This event will cover new resources and tools now available to constituents nationwide. This briefing will also discuss gaps in early detection and diagnosis for the one in five Americans living with sleep disorders, along with legislative recommendations and updates on federal programs. Speakers Include: Dr. Michael Grandner, University of Arizona Dr. Kali Cyrus, Patient Advocate Julie Flygare, JD, President & CEO, Project Sleep Following the briefing, Project Sleep will invite Capitol staff to participate in a free sleep screening event to discuss potential concerns about their own sleep or wakefulness. These one-on-one educational consults with sleep specialists will take place in the same room, Rayburn Room 2075 from 1:30 – 3:30 PM ET. This screening event is for informational purposes only and is not intended as a substitute for professional medical advice, diagnosis, or treatment. To attend the briefing, please RSVP to Lindsay Scola: lindsay@lindsayscola.com Graphics by: Project Sleep #sleepadvocacy #sleepawareness #BeyondSleepy #idiopathichypersomnia #sleepdisorder

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